Cicely Saunders Institute Triennial Report 2014-2017 by Cicely Saunders Institute

Triennial Report 2014â&#x20AC;&#x201C;17 â&#x20AC;&#x2020;Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation

Contents

Introduction iv Research and Impact Strategy 7 Evaluating and Improving Care

Ageing and Multimorbidity

Clinical Services

Palliative Care Services

Fatigue and Muscle Weakness 22 Spasticity

Person-Centred Outcome Measures (PCOMs) 24 Palliative care (Patient) Outcome Scale (POS) family of measures 25 Need, Complexity and Cost in Palliative Care

PCOMs for Rehabilitation

Sexual Orientation and

Health Palliative Care

The Cicely Saunders Institute 59

The Centre for Global

Breathlessness

Annual Lectures

Decision Making

Symptom-Led Research 18

Clinical Education

to Understand, Evaluate

Assessment, Communication and 16

Seminars, Workshops and

Partnerships and Engagement

Improving Care Quality,

Care Academy

The Use of Routine Data

Gender Identity

Pioneering New Interventions and Models of Care

and Improve Care

The European Palliative

Living and Dying in Society

Service Innovation

45 46

Public Involvement, Engagement and Outreach

Online engagement

Education and Capacity Building

PhDs in Palliative Care and Rehabilitation

MSc, Postgraduate Diploma/ Certificate in Palliative Care

E-learning to Disseminate Research Guidance into Practice

– Palliative Care

Rehabilitation Services

Service Innovation – Rehabilitation

Contribution to the Disciplines

Publications

Research Support

118

Acronyms 120

Introduction The need for palliative care and rehabilitation has never been greater, and is increasing rapidly. As more treatments are discovered, for people at all ages, and people live longer due to reductions in acute disease, the prevalence of other health problems increases. Adults and children can live with different and often multiple illnesses, recovering from some and experiencing others. This leads to a variety of symptoms and concerns for patients and their families, which need detection, recognition, treatment and care. Patterns of illness, living and dying are changing as chronic and progressive diseases coexist, and the boundaries between being ill and dying are obscured and prolonged. Thus, palliative care and rehabilitation are of mounting importance to societies across the globe. In 2014, the World Health Assembly unanimously passed a resolution to ensure the “Strengthening of palliative care as a component of integrated treatment within the continuum of care”. This outlined a set of standards and guidelines for palliative care and signalled to national governments that palliative care must be part of their health policies, budgets and healthcare education. However there is still a very long way to go. A 2014 report by the World Health Organisation (WHO) and the Worldwide Palliative Care Initiative estimated that globally only 14% of those in need of palliative care receive it. This gap is amplified by the shortage of workforces, services and facilities. Future predictions of need, undertaken by the Cicely Saunders Institute, have found that, by 2040 there will be a 25% increase in the annual number of people who die in England and Wales, and this will result in a >42% increase in need for palliative care (see section Living

and Dying in Society). The reasons for the increase in people living and dying with chronic illness include high birth rates in the 1950s and extended life expectancy. Many countries face similar projections, and so the need for palliative care and rehabilitation will escalate. As the nature of chronic and progressive diseases change, so do the interface between palliative care and rehabilitation, and the need to live well despite progressive or very serious illness builds. Knowledge of the best cost-effective ways to provide care and therapies for people affected by serious and progressive illness, to organise services, to ensure skilled staff, and to provide education and grow workforce capacity is urgently needed. The Cicely Saunders Institute, opened in 2010 by HRH Princess Anne, is the world’s only purpose-built Institute dedicated to palliative care and rehabilitation. The Institute is a unique partnership between King’s College London, the charity Cicely Saunders International, the hospitals and services of King’s Health Partners (our Academic Health Sciences Centre) and Northwick Park Hospital Rehabilitation Services. We benefit from partnering with many other charity and statutory services, experts, patients and families, locally, nationally and internationally. The Institute pioneers the very best in palliative care and rehabilitation through integration of: •• Cutting-edge research – building knowledge and discovering new treatments through robust, world leading research, informed by patients and families. •• Skilled multi-professional care – delivering top quality evidence-based clinical care

Introduction / v

and support to patients and carers, for life and living, and death and dying. •• Innovation in engagement and education – embedding change in policy and practice nationally and internationally, engaging with patients and families and inspiring tomorrow’s leaders in the field around the world. At the Cicely Saunders Institute we embrace the modern definition of palliative care, not only supporting care at the end of life, but helping people to live well and seeking to improve the quality of life of people facing the problems associated with complex life-threatening illness. We do this through the prevention and relief of suffering, pain, symptoms and other problems by early identification, assessment, treatment and care: physical, psychological, social and spiritual. As Cicely Saunders said, “You matter because you are you, and you matter in all the moments of your life”. We take this vision to our global work, and in 2017, formally launched our global programme of palliative care, building on our research over many years.

by grants and our work in the South London National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) we have expanded our patient and public interactions and have launched a new virtual online forum www.csipublicinvolvement.co.uk (see Partnerships and Engagement). •• We have developed and then trialled new palliative care and rehabilitation services and treatments. For example, identifying those people with refractory breathlessness (which is often a signal of severe problems), we found that a multi-professional holistic service integrating palliative care with respiratory medicine and physiotherapy, improved quality of life, and also length of life for many. The service was short-term, worked with other services, and resulted in no additional overall cost to the health service or patients and families themselves (see Symptom-Led Research). This model of short-term integrated palliative care is now being trialled to help support people with neurological illness and the most elderly in our society, and our initial research has entered the national guidance on palliative care in many countries (see Evaluating and Improving care). •• We have studied in detail ways to improve care at home, and the factors that drive emergency department admission, hospital attendance, and hospital death. We have developed a model of the key factors that enable people to be at home. A feeling of safety and security is an essential component, and this needs to be underpinned by the presence and competence of supporting clinical and social services and their staff (see Evaluating and Improving Care, and Living and Dying in Society).

The Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation.

Highlights of our achievements in this current period include: •• We ensure that Patient and Public Involvement bolsters all our projects. Aided

•• Our outcome measures in palliative care and rehabilitation are now used in over 9,000 difference services across the globe, and are used widely to support clinical care assessments and in research studies. Our research has developed new adaptations of these measures to help support more people with different illnesses outside of specialist palliative care and hospices services, such as

vi / Cicely Saunders Institute

those affected by myeloma, dementia, renal disease, and those with specific rehabilitation needs. We have refined the ways to help clinical teams use this information for individual patients to screen for problems, monitor progress and provide better care (see Person-Centred Outcome Measures). •• Ageing has been a major theme of our research. We have found that, sadly, although the UK End of Life Care Strategy seems to have enabled some people who want to die at home, it does not appear to be reaching those with multimorbidities, at least for people with underlying respiratory diseases. New work in both cancer and dementia has identified factors that result in emergency department attendance in the last year of life (see Living and Dying in Society). •• In Education, we congratulate our many undergraduate and postgraduate alumni and current students for their achievements and awards. We work with the medical student undergraduate society for palliative medicine, and welcome medical students to our Institute for teaching with the clinical services on the wards and for projects. Our multi-professional MSc programme, run in collaboration with St Christopher’s Hospice, has given us the opportunity to work with many talented future leaders from across the globe. We also provide shorter diploma, certificate and single module courses (see Education and Capacity Building). •• We were delighted to receive one of the highest satisfaction scores of any course in the UK from students of our MSc course in Palliative Care. The results from the independent national survey of postgraduate taught students found that 96.5% of respondents were overall satisfied with our course in 2017. The national average is around 83% (2016). There were insightful suggestions for continued improvements, and we benefit from our student representatives on our programme committee. We are grateful to our MSc students for their contribution to our endeavours. •• Our group of postgraduate research students has been growing, with an increasing number

of colleagues studying for a PhD with us. We offer bespoke PhD programmes linked to our research teams. Our success rate is very high; we congratulate our alumni from this recent period. We are delighted that for the first time ever, despite our growth in numbers, the independent national student survey found 100% of respondents were satisfied overall with their experiences. This is considerably higher than the reported national average of 82%. We benefit from our PhD students’ suggestions for improvements, and their contribution to our overall research efforts and dissemination. •• We continue to host regular lectures, seminars and workshops and benefit from engagement with world-leading experts, especially in our vibrant Cicely Saunders International annual lectures, which we stream via live video link across the globe (see Education and Capacity Building). •• We are delighted to report that since 2014 we have successfully won new grants, programmes and fellowships which are vital to support our work. We believe it is imperative to publish our findings, making our knowledge available to others and, wherever possible, free to access. Since our last Triennial Report we have driven up the quality of our publications, with increasing numbers in high impact journals (see Publications) and with growing numbers of research outputs being in the top 1, 5 and 10% of Field-Weighted Citations in the world (P.80-82). A major highlight in 2016 was our Athena SWAN Silver award from the Equity Challenge Unit. We were thrilled that the panel commended many of our staff and student practices, our progress in improving equality, our peer support and our nurturing of growth and talent. We have been working to improve our equity and race equality for several years and see this as a vital component of our approach. We thanks the many supporters, funders and collaborators, and the teamwork of the many adept colleagues and students, working across the Institute and our partner organisations. We hope that you find aspects in our report of interest.

Research and Impact Strategy / 7

Research and Impact Strategy Palliative care and rehabilitation are important for people of all ages, in all sections of society, and in all countries. Worldwide more than 40 million people require palliative care every year, according to analysis by the World Health Assembly. The need for palliative care and rehabilitation is set to rise, due to increases in non-communicable, chronic diseases and population ageing. Our recent work projected a 42% increase in population palliative care need in England and Wales by 2040 (Etkind et al., 2017). With increased need, more patients will require specialist palliative care, specialist rehabilitation and new models of integrated care. There is unequal access to palliative care and rehabilitation services globally, and considerable variation in models of care, meaning that many chronically ill patients and those close to them miss out on the best care. These issues were recognised in the 2014 landmark World Health Assembly (WHA) resolution, which urged member states to respond by strengthening integration and implementation of palliative care services into national health programmes and at all levels of society. Our research strategy is to lead the world in ethical and robust research that discovers and tests solutions to improve care and treatment for people, families and communities affected by progressive, advanced and serious life limiting conditions, by better understanding their needs. Our goal is that our findings enable individuals to live well despite serious illness, through impeccable symptom management, rehabilitation and palliative care, and that their families and those close to them are well supported. We build capacity and knowledge for these fields and

seek to transform treatment and care wherever people are cared for. We find solutions that cross health and social, statutory and voluntary sectors, addressing physical, emotional, social and spiritual needs. We aim to translate our research quickly into care, practice and policy so it can benefit people now. Our research has four main strands, with improving care for patients and families at the heart of everything we do (Figure 1). These strands are inter-related and operate across our multi-professional staff, care settings and disease groups. Across strands we hone research methods in our field; we conduct methodological development to improve rigour, ethical standards and ways to better understand and support the most profoundly ill populations. Evaluating and improving care: These studies develop, test and trial new and refined models of care and services that are more integrated within existing health and social care, across various settings, to better meet the needs of patients and their families. Bolstered by our unique interface between palliative care and rehabilitation, we reach beyond the traditional cancer domain to other conditions where palliative care has been neglected, including neurological disorders, HIV/AIDS, renal, heart and respiratory failure, and, importantly, multimorbidity and frailty. Symptom-led research: Relief from distressing symptoms is a core component of palliative care and rehabilitation. Symptoms such as breathlessness, depression, pain, spasticity, muscle weakness, nausea and fatigue are common across many diseases. Our focused clinical research on symptoms includes

8 / Cicely Saunders Institute

Figure 1: Palliative Care and rehabilitation research at the Cicely Saunders Institute

nce ida Gu

Method olo gic a

Pol icy an

la b

uca

ti o n

Patients and Families

C ol

Symptom-led research • Breathlessness • Fatigue • Pain • Spasticity • Depression • Nausea

Evaluating and improving care • Cancer & non-cancer • Neurological disorders • HIV/AIDS • Renal failure • Organ failure • Complex disability ement • Multimorbidity rov p m li

Person-Centred Outcome Measures (PCOMs) • Palliative care Outcome Scale (POS) • Goal Attainment scales • Rehabilitation tools • Complexity & costs

E n ga ge m e

systematic reviews, observational studies and randomised controlled trials to test new interventions and treatments, so that symptoms and the impact and distress they cause can be prevented and managed more effectively. We consider symptoms in the context of the wider holistic needs of the person. Person-centred outcome and measures: Developing and implementing robust patientcentred measures of outcomes in palliative care and rehabilitation is vital. Our hallmark is that we place person-centred outcomes at the centre of needs and service evaluations. We develop and use short measures for patients, families and observers/staff that capture the highly varied circumstances of complex patients and provide fundamental tools for research and clinical practice. These cover pain and symptoms, psychological and spiritual need, as well as social,

Living and dying in society • Ageing • Caregivers • Preferences & choices • Place of care & death • Spirituality • Ethnicity & culture • Sexual orientation & gender identity

service and rehabilitation concerns. Future work is taking forward these tools to aid the assessment of complexity and care commissioning, which is particularly important given the poor or patchy funding of palliative care and rehabilitation. Through global partnerships we are also transforming the evidence base and delivering culturally appropriate palliative care in sub-Saharan Africa and in Asia. Living and dying in society: Societies are changing across the globe. Those who are suffering, have profound disability, or are dying are especially vulnerable. To future-proof palliative care and rehabilitation, we are studying the needs and preferences of vulnerable or overlooked groups and areas: older people, caregivers, preferences and choices, ethnicity, sexual orientation and gender identity, culture, and spirituality. Our findings seek to

Research and Impact Strategy / 9

lead the evidence response to the debate over questions such as; how to meet the needs of a growing ageing population, the diverse cultures in our society, advance directives, and location of dying. Our research in this strand underpins our other programmes and bolsters our expanding health economic focus. Our strategy to enhance reach and impact is multifaceted (Figure 2). We collate best evidence to improve current practice and incorporate new findings into our education programmes. We have a strong focus on engagement and implementation to ensure our research has a wide ranging impact on policy, health, welfare, and society. Our work has impacted national and international healthcare frameworks and guidance, and has improved care for patients and families by transforming clinical services. For example, our clinical tools aid robust assessment, outcome evaluation, and service development. In addition, our research raises awareness, tests solutions and improves access to health and social care for the most vulnerable in society, across Europe, Australia, Asia and

Africa. We have developed strategic approaches to wide multi-sector partnership, and achieved reach and significance by: Embedding active Patient and Public Involvement (PPI) into all our work and research programmes to ensure research follows the priorities of individuals. PPI is especially important for palliative care and rehabilitation, as they are person-centred and holistic specialties. All research projects have strong PPI from their inception, and we host regular workshops and PPI engagement events. Integration and engagement with our user groups, collaborators, beneficiaries and audiences who include: •• health service providers, clinicians, service managers and directors in hospitals, hospices and community services; •• policy makers; •• inter-governmental organisations; •• national and international professional associations;

Figure 2: Strategy to enhance reach and significance of impact at the Cicely Saunders Institute

Collaboration for Leadership in Applied Health Research and Care (CLAHRC)

King’s Health Partners (KHP)

nal m

ndly

Patie n

t and

Publi

t en ta l ic ca de ca l/a

r-frie

cli

te r

Fo s

e, use

ion

– fre

gr at

Socia l & tr aditio

vision e pro

Knowledge exchange platforms

edia

rc Resou

WHO Collaborating Centre (WHO CC)

Academic Health Science Networks (AHSN)

ershi

c Invo

Lead

lveme

Beneﬁciaries local, national, global

10 / Cicely Saunders Institute

•• non-governmental organisations and major charities; •• individual and umbrella service-user organisations that influence policy. Providing resources, which are user-friendly, free, and targeted according to audience, culture and language. We complement web dissemination with documents in hard copy. Our WHO Solid Facts series, now translated into Russian, Italian and Spanish, is described by WHO as one of the most popular resources they have ever produced. Our web based downloadable resources in breathlessness management help clinicians across the globe improve their practice. For our Palliative care Outcome Scale we provide a dedicated website, with tools and guidance available for free download. Engaging with social and traditional media to increase the awareness and reach of our research, including blogs, media platforms, radio and television, Twitter (@CSI_KCL) and Facebook (www.facebook.com/CicelySaundersInstitute), to share latest updates, alert to news, engage in public discussions; and our YouTube channel www.youtube.com/user/CSIKCL where we upload presentations, discussions and videos about our work. Fostering clinical/academic talent with joint posts and partnerships at all levels with our clinical academic groups across King’s Health Partners, our Academic Health Science Centre. Our purpose built Institute aids this further. Leadership: Our academics are all board members of, and/or chair, international advisory groups, taskforces, national bodies and professional associations; this enables dialogue and exchange about current issues. All these are buttressed by the environment and resources across King’s College London and King’s Health Partners. This includes the NIHR Collaboration for Leadership in Applied health Research and Care (CLAHRC), in which we lead a theme on palliative and end of life care, and our work as a World Health Organisation Collaborating Centre (see Partnerships and Engagement).

Evaluating and Improving Care This strand improves the care and treatments that patients and families receive by studying and understanding failings and strengths of existing services, developing and trialling models of care and services that better meet the needs of patients and families, and determining the effects of care and treatment. Our work spans cancer and non-cancer conditions, and is conducted locally, nationally and internationally. Our studies follow the Medical Research Council (MRC) guidance for the development and evaluation of complex interventions, and the MORECare Statement, which outlines best research methods in palliative and end-of-life care (see www.kcl.ac.uk/nursing/departments/cicelysaunders/study/E-learning.aspx for our e-learning).

12 / Cicely Saunders Institute

To respond to the urgent challenges of improving care in the future, better models of care are needed to support people, whatever their condition, and wherever they are cared for. We have a series of complementary programmes to discover, develop and evaluate new models of care that are more integrated with existing health and social care services. Long-term neurological disorders such as multiple sclerosis (MS), Parkinson’s disease and motor neurone disease (MND) affect about a quarter of a million people in the UK. Many have a progressive disease and these people will often experience profound symptoms, deterioration in their quality of life, as well as emotional, social and spiritual concerns. Caregivers often bear the brunt of providing support. In a joint programme of work bringing together neurology, rehabilitation and palliative care, we are tackling the many problems experienced by this group with a world first, multi-centre randomised controlled trial: ‘OPTCare Neuro’. This tests the clinical and cost effectiveness of a short-term integrated palliative care service for people with long-term neurological conditions. As part of this trial, we mapped current service provision in eight regions in the UK and found that neurology and specialist palliative care were often not co-terminus and varied considerably. Integration and collaboration between neurology and palliative care services varied by disease and region, and was limited in several settings and situations, especially for people who did not have MND (van Vliet et al., 2016). In a survey of neurology and palliative care clinicians across OPTCare Neuro sites (Figure 3), both professional groups felt the new service being trialled would enhance future collaborative working (Hepgul et al., 2017). This work utilises a person-centred measure to capture palliative outcomes important to people with long-term neurological conditions (Gao et al., 2016). The models of care developed in OPTCare Neuro have also influenced and led to our OPTCare Elderly programme, which develops and trials new short term integrated palliative care specifically focused on the needs of older people (see Living and Dying in Society).

Figure 3: Neurology and palliative care professionals’ ratings of their current levels of collaboration with the other specialty (Hepgul et al., 2017) 60

Percentage of responses (%)

Pioneering new interventions and models of care

Excellent

Good

Neutral

Poor

None

Neurology responders, n=33 Palliative responders, n=26

Building on previous work, we examined whether an individualised multi-professional case conference intervention delivered in the patient’s home, called ‘Hospital2Home’, influenced the palliative care concerns of those living with advanced fibrotic interstitial lung disease. We evaluated the feasibility and acceptability at a specialist centre using a fast-track randomised controlled trial with qualitative interviews (Bajwah et al., 2015). The case conference intervention was both feasible and acceptable. People who received the Hospital2Home case conference showed an immediate improvement in their palliative care needs, which was sustained for at least two months. In both patients and carers, quality of life was improved and anxiety and depression was reduced (Bajwah et al., 2015) (Figure 4). In a joint project with Hull York Medical School, this work helped develop a palliative care needs assessment tool for use in respiratory clinics, which has been endorsed by the National Institute of Clinical Excellence (NICE) (Boland et al., 2016; Reigada et al., 2017). We continue to research the needs of those with kidney failure, and how to best address them, summarising the evidence (Kane et al., 2013) and co-leading international

Evaluating and Improving Care / 13

Figure 4: Line diagram showing change in mean (with 95% CIs) Palliative Care Outcome Scale (POS) over time, Hospital2Home palliative care trial (Bajwah et al., 2015)

Figure 5: Proportion of out-of-hospital deaths over time in retrospective cohort study of 321 people with renal disease (Lovell et al., 2017) 100

90 80

Percentage

Mean POS

54 44

40 31 30

0 Baseline

Week 4

Week 8

Assessment times Fast track to Hospital2Home, n=26 Waiting, receiving Hospital2Home after 4 weeks, n=27

10 0 2006

2007

2008

2009

2010

2011

2012

Year Died in hospital Died out of hospital

consensus-building on renal supportive care (Davison et al., 2015), including management of people who choose, or are advised, not to have dialysis for their renal failure (Murtagh et al., 2016). We have proposed a new international system to classify dialysis withdrawal (Murphy et al., 2014), and contributed to a patient and professional perspectives on dialysis decision making review (Hussain et al., 2015).

of non-dialysis models of care; we worked on a collaborative national survey which shows that non-dialysis models of care are very variable across the UK (Okamoto et al., 2015), and both patient (Tonkin-Crine et al., 2015a) and GP (Tonkin-Crine et al., 2015b) understanding of this option is very limited. To address some of these challenges, we developed and piloted a renal-specific advanced communication training programme for renal doctors and nurses Our primary research provides evidence on (Bristowe et al., 2014a). Our study across the UK health-related quality of life measurement; and Ireland highlighted the importance of pain we found that SF-36 (a common quality-of-life management and rehabilitation interventions measure) works poorly in this population (Erez (Lowney et al., 2015), and we have taken part et al., 2016), and quality-of-life measures specific in an international study with colleagues in to this advanced stage of renal disease are needed. Australia which demonstrates how inclusion We therefore developed renal versions of the of palliative care services for this population can POS family of measures (see Person-Centred deliver better symptom management and quality Outcome Measures (PCOMs)), and expert of life (Morton et al., 2016). consensus in the UK has recommended our POS-S renal measure (Breckenridge et al., Our ethnographic study in two UK Intensive 2015). Our retrospective cohort study of 321 Care Units studied the processes of decision older patients with advanced kidney disease making and managing clinical uncertainty who died, showed that 63% died in hospital and (Higginson et al., 2016a). We identified four only 22% died in their usual place of residence; trajectories with distinct patterns: curative those actively managed conservatively (without care from admission; oscillating curative and dialysis) had four times the odds of dying out comfort care; shift to comfort care; comfort of hospital (odds ratio, 4.0; 95% confidence care from admission. Some families considered interval, 2.1–7.5) (Lovell et al., 2017) (Figure 5). decision-making a negative concept and This has important implications for development preferred uncertainty. We found eight categories

14 / Cicely Saunders Institute

Image: Professor Kathy Eager (Director of the Australian Health Services Research Institute) discussing findings with Institute staff and students.

PhD student, Jen-Kuei Peng My study aims to analyse the associations between longitudinal patterns of healthcare, factors, and outcomes in patients with end-stage liver Image: Dr Jen-Kuei Peng wins a poster award at 15th World disease (ESLD). To Congress of the European date, little is known Association for Palliative Care 2017. in this research area. I chose to study at the Cicely Saunders Institute because of its reputation and multi-professional environment. I’ve done a systematic review (symptom prevalence and quality of life of patients with ESLD) and an analysis focusing on trends in and factors associated with hospital deaths in patients who died from liver disease. I’ll move on to the main analysis using a database from Taiwan and hopefully the results will inform future care improvement.

of decision-making; three related to the care outcomes (aim, place, and response to needs) and five to the care processes. Overall, decisionmaking in critical illness involved a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When treatments oscillated between curative and comfort efforts there was greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including resuscitation discussions. Offering further support, possibly with expert palliative care, communication and discussion of ‘trial of treatment’ may be beneficial at this time, rather than waiting until the ‘end of life’ (Higginson et al., 2016a). A qualitative research study has considered how tools and interventions impact upon healthcare professionals’ approaches to and perceptions of care delivery (Sleeman et al., 2015) (Figure 6). From interviews with patients and families about their experiences of uncertainty in advanced illness, we developed a typology of patients’ responses and preferences to inform practice (Etkind et al., 2017). Patients discussed their engagement with illness, information needs, priorities and the temporal focus. This typology may be a useful starting point to guide clinical assessment and shared decision making (Etkind et al., 2017).

Evaluating and Improving Care / 15

Figure 6: Model of healthcare professionals’ perceptions of the benefits and harms of integrated care pathways for end-of-life care (Sleeman et al., 2015)

Strong Symbolic Value Legitimises death as an outcome

Positive focus to care

Not enough education

Beneﬁts Process of care are clear, consistent, comprehensive

Signal that focus of care has changed

Potential dangers due to tick boxing, poor decision making

Not enough evidence

Harms

Weak Infrastructure

The AMBER care bundle (which stands for Assessment, Management, Best practice, Engagement, and Recovery uncertain) is a complex intervention developed to better care for hospital patients whose situations are clinically uncertain and are at risk of dying during their hospital stay despite treatment. For these patients, staff develop a plan with patients (where possible) and their family that documents what is important to them. The patient’s status and their wishes are revisited daily. A first step was to understand people’s experiences of this model of care. Working with the clinical team who developed this intervention, we tracked 638 patients receiving care supported by the AMBER care bundle to systematically understand their outcomes and care destinations (Carey et al., 2015). We then led a comparative observational mixed methods study of routine use of this intervention, and involving interviews and surveys, compared the experiences and views of those individuals who had and had not received care supported by this intervention (Bristowe et al., 2015a). Those supported by the bundle had more often

discussed their prognosis with doctors and nurses, and had a greater awareness of their prognosis. However, patients supported by this intervention also reported less clarity in the information received about their condition than those who were not. Although the consistency and quality of communication were not different between the two groups, those supported by the AMBER care bundle described more unresolved concerns about caring for someone at home (Bristowe et al., 2015a). Understanding whether these differences are due to the effect of the bundle, or due to different people being offered care with the bundle, will be explored in our new study ‘ImproveCare’; a feasibility cluster randomised controlled trial comparing the AMBER care bundle to usual care.

PhD student, Cheng-Pei Lin As a PhD student at the Cicely Saunders Institute, I am now building on preliminary work which has taken place in the UK around communication skills and advance care planning for cancer patients, and testing the feasibility of advance care planning in Taiwan. This study could be the first to use advance care planning for end-of-life cancer patients in Asia, and will impact the healthcare system and legislation in terms of palliative care in Taiwan. Through this study, an international collaboration between the UK and Taiwan will be established to provide a better palliative care service for Taiwanese people. In another systematic review, we are appraising the effectiveness and cost-effectiveness of specialist palliative care in hospital settings, as most adults continue to die in hospitals from advanced chronic illness, and the demand for specialist palliative care is expected to increase. This will aid future development, funding and implementation of evidence-based care by

16 / Cicely Saunders Institute

identifying the most effective ways to provide palliative care in hospital settings.

Improving care quality, assessment, communication and decision making To improve the quality of care, this research seeks to support staff wherever care is being provided, in communication, assessment and to understand how services work effectively. Research studies here are often directly embedded in clinical training programmes, to ensure the education being delivered is evidence-based. Robust evaluation ensures that we continually develop better training and education (see ‘Clinical Services’). The QUALYCARE study used a population based mortality follow-back survey of 352 cancer patients to examine the quality of care provided to people in their last stages of life. We asked; is dying in hospital better than home in incurable cancer, and what factors influence this? We found that most people (80%), died in the place where

they lived during their last week of life. Home deaths could be explained by four main factors: patient’s preference, relative’s preference, and the presence of home palliative care or district/ community nursing. The propensity of death at home also increased when the relative was aware of incurability and the patient discussed their preferences with family (Figure 7). Dying in hospital was associated with more hospital days towards the end of life, fewer general practitioner home visits, and fewer days taken off work by relatives. Adjusting for confounders, patients who died at home experienced similar pain levels but more peace in their last week of life (ordered log odds ratio 0.69, P = 0.007). Grief was less intense for the relatives of patients who died at home than for those of patients who died in hospital (Gomes et al., 2015). Therefore, dying at home, if supported, is better than hospital for peace and grief, but requires a discussion of preferences, GP home visits, and relatives to be given time off work.

Figure 7: Adjusted and strongest unadjusted associations with dying at home in the mortality followback study QUALYCARE (Gomes et al., 2015) Adjusted and strongest unadjusted associations (n=352) Illness-related factors Length of relative’s awareness of incurability

HOME

Individual factors

Environmental factors

Personal variables

Health care input

Discussion of preference HOME with family

Hospital days

HOSPITAL

GP home visits

HOME

Home palliative care

HOME

DN/community nursing

HOME

Marie Curie nursing

HOME

Nursing home stay

HOSPITAL

Home preference

HOME

Social support Relative not working/off work

HOME

Relative’s home preference

HOME

Place of death

Factors retained in the final multivariate model (P <0.05) except for those in italic, which show the strongest unadjusted associations but due to nearzero cell frequencies and multicollinearity with place of death could not be included in the logistic regression model.

Evaluating and Improving Care / 17

To understand the impact of caregiving we explored the grief of family caregivers further, comparing the experiences of adult-child and spousal/partner relations. Patients cared for by adult children were more likely to spend time and die in a nursing home. Higher grief intensity was associated with higher caregiving intensity, especially for spouses, and there were differences between the groups in their needs (McLean et al., 2017). To enhance research conduct in this field in the future, we also analysed the factors independently associated with participation in this mortality follow-back survey. We found that respondents were less likely to take part when patients had died in hospital or when the patient was not their spouse or partner. Respondents of very elderly patients, aged 90 years or older, were more likely to take part. When given, reasons for not taking part were often multidimensional, most commonly study-related (36%), proxy-related and grief-related (25% each) (Calanzani et al., 2016). These findings help in the interpretation of mortality follow-back studies, as these groups, missed until now, can be the subject of future enquiry, ensuring that their needs are not overlooked. The DINAMO project builds on the work of QUALYCARE and aims to enhance advanced training and research to optimise home palliative care. A meta-ethnography was conducted to understand patients and family caregivers’ experiences with home palliative care services, in particular the mechanisms of action of home care services (Sarmento et al., 2017). In a review of 28 papers reporting on 814 participants, the presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication) of home palliative care emerged as critical. These contributed to meeting a core need for feeling secure at home, allowing patients and family caregivers to focus on the dual process of living life and preparing for death at home (see Figure 8). This research is highly important in understanding the essential ingredients of effective home care; services must be 24/7 present and viewed as being skilled, especially in terms of symptom control and communication. It points to the need for multi-professional skilled palliative care teams, which provide a service around the clock (Sarmento et al., 2017).

Examining trends of place of death found a long standing trend towards hospitalised dying in Portugal, which is one of the world’s most rapidly ageing populations. If this continues, resulting hospital deaths in Portugal will increase by more than a quarter by 2030 (Sarmento et al., 2016). These findings are being taken forward to improve home care services with targeted policy and interventions. Figure 8: Lines-of-argument synthesis: simplified model of the experiences of patients’ and caregivers’ with home palliative care, systematic review analysis (Sarmento et al., 2017)

e g lif

n Livi

Pre

at h

par

e fo

r de

ath

Security Trusting team to be there for support, prevention and relief of avoidable suffering at home as the disease progresses

Presence 24/7 availability home visits

Competence Symptoms control communication

Home palliative care for patients and families

Symptom-Led Research Traditionally medical research is often disease focused, rather than focusing first on the needs of people and the problems and concerns they experience. Yet, symptoms and problems are often similar across diseases, and importantly the numbers of people with multiple illnesses is increasing, meaning that a silo approach to diseases may not serve well in the future. This strand places improving and relieving distress from symptoms at the core. When we focus on individual symptoms, we alsoÂ consider these in the context of the holistic needs of the person. Our research includes systematic reviews, observational studies and randomised controlled trials to test new interventions and treatments. Our goal is to better understand the symptoms experienced by patients with advanced illness and their families towards the end of life, and to discover and trial more effective ways to prevent and manage the impact and distress they cause. Research targets symptoms that have been neglected and our programme extends across multiple patient groups, including those with cancer, chronic respiratory disease, heart failure, HIV/AIDS, andÂ long-term neurological conditions, and across different healthcareÂ settings.

Symptom-Led Research / 19

Our earlier work demonstrated that symptom prevalence and burden was consistently high; recent systematic reviews suggest this has not changed. Pain, fatigue, anorexia, breathlessness and worry are particularly common and reported by more than 50% of patients across all groups (Moens et al., 2014). Among people with HIV on antiretroviral therapy, depression and anxiety are also common, with more than 50% of people experiencing stigma (Lowther et al., 2014a). Our research programmes remain active across the majority of each of these symptoms, though in this period progress has been particularly strong for breathlessness, fatigue and spasticity. These are especially important as they are symptoms that can limit people from continuing activities they enjoy, in roles that are important to them and from independence in daily living.

Breathlessness Breathlessness is a common and distressing symptom that causes considerable disability and social isolation. Two million people in the UK and more than 75 million worldwide are affected by breathlessness every year. Breathlessness generally increases as disease progresses, and can be seen as a signal for overall deterioration. Figure 9: Kaplan-Meier estimates of survival according to study group (Higginson et al., 2014a) 1.0

Proportion Surviving

0.8

0.6

0.4

0.2

0.0

200

400

600

800

1000

Days from consent Number at risk Breathlessness support service

Control

Breathlessness support service

BSS-censored

Control

Control-censored

1200

It is frightening for patients and families, and often results in emergency hospital admission because it is accompanied by feelings of panic. Since our initial work, supported by Cicely Saunders International, our efforts to support patients and carers with better treatments and services for breathlessness have continued. We have continued to synthesise evidence in systematic reviews, e.g. on Benzodiazepines (Simon et al., 2016a), and examined promising pharmacological and non-pharmacological treatments in clinical trials. In a randomised controlled trial, we investigated the effectiveness of the Breathlessness Support Service; a short-term, single point of access service integrating palliative care, respiratory medicine, physiotherapy, and occupational therapy. The service improved patients’ feeling of mastery, a component assessing how their breathlessness was reducing their quality of life, compared with the control group (mean diﬀerence 0∙58, 95% CI 0∙01–1∙15, p=0∙048; eﬀect size 0∙44). Interestingly, overall survival over 6 months (94% vs. 75%) was also improved (Figure 9). This effect was observed mainly in patients with chronic obstructive pulmonary disease (COPD) and interstitial lung disease rather than cancer (Higginson et al., 2014a). The findings support the early integration of palliative care for patients with breathlessness, and have been widely shared, including in the American Society for Clinical Oncology (ASCO) guidelines for integration of oncology and palliative care. Further work has explored the potential mechanisms of action of the Breathlessness Support Service, to aid wider replication, make full use of the data, and avoid research waste. These analyses found that core components of the service that patients emphasised were: improved self-management with multi-dimensional components of pacing and planning during physical exertion; cognitive and psychological strategies; breathing techniques and positions; practical devices and aids, such as a hand-held fan and a water spray; and modifying the home environment. A commonly remarked on component was the use of a ‘poem/laminate’ to aid breathing and plan during crises (Reilly et al., 2016a; Gysels et al., 2015). A critical

20 / Cicely Saunders Institute

Figure 10: Cost of care for breathlessness. Box plots showing medians and 25th and 75th percentiles of healthcare versus informal care cost by diagnosis (number of observations in brackets) (Dzingina et al., 2017a) Informal care cost

1,000 (£)

Health care cost

0 Cancer(21)

COPD (56)

CHF (5)

ILD (19)

Other (3)

Cancer(21)

COPD (56)

CHF (5)

ILD (19)

Other (3)

1,000 (£)

0 Cancer (21)

Non-Cancer (83)

element was the tenor of care provided by the service, which focused on supporting the patient and their family, and was noted by patients as improving the dignity for people suffering from refractory breathlessness (Gysels et al., 2016). Analysis of health service utilization and economic costs relating to breathlessness (Dzingina et al., 2017a) identified the large costs of refractory breathlessness on formal care costs, especially due to hospital admissions. The analysis also uniquely quantified this high cost to informal carers, with costs of informal care being potentially more than double that of formal care services (Figure 10). The research indicates the benefit of introducing breathlessness services more widely. To aid this, we need further understanding of which components might be modified or

Cancer (21)

Non-Cancer (83)

prioritised, which patients might benefit most, and the economic impacts. In a newly opened study ‘OPTBreathe’, we are using a discrete choice experiment to determine

Image: Dr Matthew Maddocks and Su de Wolf (Photo credit: David Tett).

Symptom-Led Research / 21

models of breathlessness services which are most valued and accepted by patients and their families or carers. Through this work, we will develop an optimised Breathlessness Support Service; provide a comprehensive evidence synthesis; and make policy, practice and research recommendations with key stakeholders. Medicinal treatments in refractory breathless are very limited. There is no drug specifically licenced for refractory breathlessness. A systematic review that we have undertaken with others, indicates that there is a potential role for oral or parenteral strong opioids such as morphine (Ekström et al., 2017a). Although widely used for breathlessness and recommended, our recently updated systematic review of randomised trials found that there is no evidence for or against benzodiazepines for the relief of breathlessness in people with advanced cancer and COPD. Analysis of all studies did not show a beneficial effect of benzodiazepines for the relief of breathlessness in people with advanced cancer and COPD compared to either placebo, or other drugs. Neither was there any effect on the prevention of episodic (breakthrough) breathlessness. Furthermore, benzodiazepines caused statistically significantly more adverse events, particularly drowsiness and somnolence, when compared to placebo, although numbers were small (Simon et al., 2016a). Overall this work points to a need to find a broader range of medicinal treatments for breathlessness. We are particularly interested in testing whether medicines used for other purposes might be helpful in palliative care, as if so, this can provide rapid, inexpensive and effective treatment. There is limited evidence that Mirtazapine, a drug used widely in the treatment of anxiety and panic, might affect the parts of the brain that register breathlessness, and therefore may have a role. We have commenced, working with colleagues in Leeds, Nottingham and Hull/York on a new study; ‘BETTER-B’. This is a feasibility trial of Mirtazapine, to determine if it may help people with chronic refractory breathlessness, and the best way to conduct research in such populations.

PhD student, Natasha Lovell Breathlessness is a common and distressing symptom of advanced illness with few effective treatment options. As part of my PhD, I am working on a clinical trial called BETTER-B (Better Treatments for Refractory Breathlessness). This trial is looking at a new drug treatment for refractory breathlessness, and builds on previous work done in the Cicely Saunders Institute as part of the Breathlessness Programme. I am currently one year through my PhD and aim to complete it in 2019 when I will return to clinical practice as a Specialist Registrar in Palliative Medicine. My overall aim is to pursue a Clinical Academic Career.

PhD student, Jo Bayly Rehabilitation may help reduce the impact of cancer on people’s lives, however services are not usually provided when people are first diagnosed. My research aims to develop and trial a new model of rehabilitation to help people with lung cancer or mesothelioma stay active and independent as they start cancer treatment. I’m a physiotherapist funded by the National Institute for Health Research. I chose to study here because the Institute provides a high-quality PhD training programme and demonstrates research excellence in both rehabilitation and advanced disease. My PhD is a clinical fellowship so I also spend time with specialist rehabilitation services to maintain and improve my clinical skills.

22 / Cicely Saunders Institute

Figure 11: Functional exercise capacity (primary outcome), quadriceps muscle strength, and mass outcomes (secondary outcomes) by treatment group. (Maddocks et al., 2016a)

Figure 12: Patients with COPD grouped according to Fried’s frailty criteria before and after pulmonary rehabilitation. Overall, rehabilitation led to a shift away from physical frailty towards a more robust state (Maddocks et al., 2016b)

Functional exercise capacity (6-min walk test) Change from baseline (m)

60 40

Before rehabilitation

20 0

After rehabilitation

-20 -40

6 weeks

Change from baseline (kg)

Quadriceps maximum voluntary contraction

Prefrail

Frail

0 -2 6 weeks

Randomised to neuromuscular electrical stimulation over 6 weeks, n=25 Ramdomised to placebo, n=27

Fatigue and muscle weakness People with advanced disease often report a reduced ability to exercise and become physically inactive, which can lead to deconditioning and a gradual loss of independence. Several factors contribute to this, including leg muscle weakness and breathlessness both of which can precipitate a downward spiral. Identifying and addressing these problems early on is important as people want to continue with important roles, perform daily activities, and avoid depending on others or feeling like a burden to others. Exercise can help but even simple forms, like walking, can be difficult when out of breath. In those patients unable to access more demanding forms of exercise, neuromuscular electrical stimulation (NMES) is an alternative method of enhancing leg muscle strength. NMES uses a lightweight stimulator to produce a controlled contraction of the leg muscles. Our highly cited

100

Not frail/robust

Percentage of patients (n=574)

Cochrane review has been updated (Jones et al., 2016), synthesising data from 933 people with advanced COPD, chronic heart failure and cancer, and demonstrating NMES as an effective strengthening therapy. In our latest randomised controlled trial, people with severe COPD were allocated to receive either active or placebo NMES over 6 weeks. On average, people performed about 15% better in a short walking test following the use of active NMES, and in interviews people who had received NMES also reported greater ease in undertaking activities of daily living, such as climbing the stairs (Maddocks et al., 2016a) (Figure 11). Muscle weakness and fatigue can contribute to the syndromes of sarcopenia and frailty, which are often seen in older people and increasingly being examined in the context of chronic disease. In older people, sarcopenia and frailty have proved to be useful tools for risk stratification, prognostication, and to prompt treatments to prevent functional decline. Both are consistently associated with increased risk of incident disability, falls, hospitalisation and mortality. In prospective cohort studies we examined the relevance of sarcopenia and frailty to rehabilitation for people with chronic respiratory disease (Jones et al., 2015; Maddocks et al., 2016b) (Figure 12). We found that sarcopenia and frailty affect about 15% and 25% of patients respectively,

Symptom-Led Research / 23

Spasticity Spasticity is the unwanted over-activity of muscles in people with damage to their brain or spinal cord. Spasticity is a common symptom in people who have hemiparesis caused by stroke, brain injury or other neurological conditions; can be worsened by external factors such as poor position or pain; and results in reduced function. Treatment for spasticity aims to improve passive function, to make it easier to self-care, to restore active function where possible, and to manage related symptoms such as pain. We have developed systems to help patients, carers and clinicians identify what targets for treatment are important and set treatment goals in real-life settings (Ashford et al., 2016a, Ashford et al., 2015a). We have undertaken the development of clinical tools and questionnaires to record the goals set for intervention (Ashford et al., 2016a, Ashford et al., 2015a), therapies (physical therapy and exercise) and medical inputs that people receive for the management of muscle spasticity in the arm or leg (Ashford et al., 2017). Key to improving any symptom, is the availability of appropriate outcome measures that capture concerns and problems that matter to patients and their families. We have developed and tested multiple patient reported outcome measures. Many utilise structured goal setting, which can help guide treatments and select which interventions are appropriate to achieve the goal (see PCOMs for Rehabilitation). The ULIS studies are a series of large international multi-centre cohort studies to describe real life practice in the use of Botulinum Toxin A (BoNT-A) in

the management of Upper Limb Spasticity (ULS). ULIS-I provided information about clinical approaches to BoNT-A treatment and the types of outcome measures that are commonly applied in routine clinical practice, whereas ULIS-II was an evaluation of outcomes following a single cycle of treatment in poststroke ULS. It identified six key goal areas for treatment and provided important evidence for functional gains over and above improvements at the level of impairment (Fheodoroff et al., 2015)(Figure 13). ULIS-III is a longitudinal observational study that will follow patients prospectively for up to two years and evaluate outcomes from repeated treatment cycles (Turner-Stokes et al., 2016a). It brings together approaches that clinicians already apply in their routine clinical practice, but targets these individually according to the specific goals set for an individual patient, thereby reducing the time that clinicians have to spend recording outcomes in a busy clinic setting. ULIS-III will build on clinical knowledge by exploring clinical decision-making and serial goal setting over repeated BoNT-A cycles, and includes a health economic analysis with spasticity-specific recording of cost utility.

Figure 13: Proportion of patients who achieved their primary goal with BoNT-A therapy based on intensity of therapy input. ROM, range of movement (Fheodoroff et al., 2015) 100 90

Patients achieving goal (%)

and that both impair global function and quality of life. We found that sarcopenia does not impact on response rehabilitation, but that frailty prevents people from completing a rehabilitation programme. However, patients who are frail respond favourably to rehabilitation and their frailty can be reversed in the short term (Figure 12). We are planning approaches to support frail people through existing rehabilitation programme and services (Bone et al., 2017).

91% 84%

85%

82%

90%

88% 81%

75%

77% 68%

66%

62%

60 50 40 30 20 10 0

n=199

159

Overall

Pain

Passive Active function function (ease of care)

Impairment Involuntary (ROM) movement

Patients with higher intensity therapy input, n=238 Patients with lower intensity therapy input, n=213

Person-Centred Outcome Measures (PCOMs) Person-centeredness means respect for persons, their values and individuality; providing holistic care covering physical, psychosocial and spiritual aspects of life; involvement of family and friends; and doing things with people rather than for them. Person-centred care empowers people to make decisions about their own care, and focuses on the whole person rather than the disease, taking into consideration their preferences and wider social and cultural context. Health services and professionals must increasingly demonstrate that they meet the needs of individual patients and their families, and that they do this in an effective and efficient way. To achieve this, and strive towards better care, services and staff must show that they are making a measurable and positive difference to patients and families receiving care. The Institute is at the forefront of the development of patient-centred outcome measures for palliative care.

Person-Centred Outcome Measures (PCOMs) / 25

Palliative care (Patient) Outcome Scale (POS) family of measures

in all situations, with additional components for specific diseases or settings.

Based on 15 years’ research we have developed the Palliative care Outcome Scale (POS) family of measures, which are used in 126 countries, and by around 9,000 registered users on our dedicated POS website (Figure 14). POS is a brief tool that captures the most important concerns of patients, in relation to symptoms but also extending to information needs, practical concerns, anxiety, mood and family anxieties. A key focus is to provide POS measures that can help day-to-day clinical practice and care, as well as be useful in research studies. To enable use in a wide variety of settings, the POS can also be called the Patient Outcome Scale, if the concept of palliative care has not yet been introduced. Updates are regularly posted on the POS website (www.pos-pal.org) to help support both clinicians and researchers. The website provides freely downloadable versions of POS and POS family measures, guidance on their use, translations, and research publications. We refine and validate new versions of POS for use in different settings and to support the care of different groups of patients, working towards a core Integrated Palliative care Outcome Scale (IPOS) that can be used

We recently developed a version of POS for people with multiple myeloma, an incurable haematological cancer, called the MyPOS (Myeloma POS). We first conducted qualitative interviews and focus groups with people affected by myeloma about what was important to their quality of life. The results identified the main areas for questions, and gaps in existing measures in the areas of symptoms, emotional wellbeing, views of health services, and, for some people, asking about sexual function (Osborne et al., 2014). The prototype MyPOS was improved using cognitive interviews, then its psychometric properties were evaluated in a multi-centre, cross sectional survey of 380 people with myeloma. Mean time to complete was 7 minutes, with less than 0.6% missing MyPOS items overall. Good convergent and discriminant validity and internal consistency indicated that this brief, comprehensive and acceptable tool is reliable and valid to support assessment and clinical decision making in the routine care of people with myeloma (Osborne et al., 2015). The performance of MyPOS over time was tested with 238 patients across the

Figure 14: Where the Palliative care Outcome Scale (www.pos-pal.org) is helping in clinical care and research (2017 figures)

9,000 Palliative care Outcome Scale (POS) users across 126 countries

Where POS is helping

26 / Cicely Saunders Institute

UK, in a longitudinal study, to provide further improvements (Figures 15 and 16). Confirmatory factor analysis found three subscales: Symptoms, Emotional Response and Healthcare Response. There was good test-retest reliability and validity. This study was also able to identify what change in the MyPOS scale was viewed by patients as clinically important (called the Minimal Clinically Important Difference or ‘MCID’). This found that an improvement of +2.5 points, and a deterioration of -4.5 points were clinically meaningful to patients (Ramsenthaler et al., 2017). In an assessment of 557 people with myeloma, at mixed stages of illness, we found that participants reported a mean of 7.2 symptoms. Pain (in 72 % of respondents), fatigue (88 %) and breathlessness (61 %) were especially common. The pattern of scores were different according to disease phase (Figure 15). Factors associated with high palliative care concerns were: a general high symptom level, pain, anxiety, low physical function, and being in the advanced stages of disease. In contrast, biomedical markers were not good predictors of higher levels of palliative concerns or symptoms. Our findings suggest that symptoms should be monitored more regularly, and drive referral to palliative care, rather than relying on traditional biomedical markers (Ramsenthaler et al., 2016a). We have found that the MyPOS is valid and reliable for use to support the care of people with follicular lymphoma. In a cross-sectional

PhD student, Christina Ramsenthaler Multiple myeloma, the second most common haematological cancer in the UK, remains an incurable Image: Christina giving a disease. However, plenary at the 14th World patients with this Congress of the European Association for Palliative disease rarely Care, in Copenhagen, 2015. receive palliative care. This PhD sought to describe and understand trajectories of symptoms and quality of life, identify possible indicators for poor quality of life/high palliative care concerns, and evaluate whether a patientreported outcome measure, the Myeloma Patient Outcome Scale (MyPOS), could be used to monitor these changes over time. The study identified that there is a distinct group of myeloma patients who consistently report high palliative care concerns as well as anxiety or distress and poor performance status. After getting to know the Institute by completing the MSc course, I decided to stay on for a PhD. I was attracted by the particular profile of the Institute, employing epidemiological research methods to the study of palliative care and health care systems, and also focusing on methodological aspects such as patient-reported outcome measurement. I have now moved on to a lecturer position, combining my interests in measurement and applied health care research in the field of ageing and long-term care. study with 124 people, the MyPOS correctly identified different patterns of concerns as reported by patients, and internal consistency was good (α coefficients 0.70-0.95). MyPOS is the first assessment and measurement tool developed specially for use in clinical practice that has been validated for use in this group (Davies et al., 2017). Long-term care residents with dementia often have multiple and severe symptoms, leading to

Person-Centred Outcome Measures (PCOMs) / 27

Figure 15: Differences in the total MyPOS and MyPOS subscales, adjusted scores in three phases of myeloma disease (Ramsenthaler et al., 2016) 40 35 p < 0.001

p < 0.001

n.s.

25.69

24.68

23.09

p < 0.005

29.58

18.86

15.34 15

15.08 13.64

6.77

Stable

27.56

Newly diagnosed

Adjusted Scores

7.03

Total MyPOS

MyPOS physical symptoms and functioning

MyPOS Emotional response

Progressive

Stable

Newly diagnosed

Progressive

Stable

Newly diagnosed

Progressive

Stable

Newly diagnosed

MyOPS Healthcare support

Newly diagnosed, n=102 Stable, n=268 Progressive, n=184

Figure 16: Responsiveness of the total MyPOS change score over 8 months post baseline for patients with different self-reported changes. Note a negative change score on the total MyPOS denotes an improvement in quality of life, n=238 (Ramsenthaler et al., 2017) -15 Improved

Total MyPOS change score

distress and behavioural challenges if untreated. Clinicians have limited time to regularly examine all residents, and can rely on reports from care workers who may struggle to assess such problems. We tried to identify measures to help assessment in this setting in a systematic review, but found that only those measures to assess pain were sufficiently validated, and there were few tools, with limited validity, to ensure comprehensive assessment (Ellis-Smith et al., 2016). We worked with staff and clients in three residential long-term care settings in London to develop and test an Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem). We found that with detailed instructions and support IPOS-Dem is suitable for care workers without professional training (Ellis-Smith et al., 2017).

-10

-5

Stable

Deteriorated

Integrated with the work on disease and a setting-specific version of POS, we have been developing the Integrated Palliative care Outcome Scale (IPOS). A bi-national (UK and Germany) cognitive interview study, using ‘think aloud’ and verbal probing techniques, supported the comprehension

2 months

4 months

6 months

Time points Reported improved Reported stable Reported deteriorated

8 months

28 / Cicely Saunders Institute

Image: Speakers at our 2016 myeloma conference (L-R): Professor Irene Higginson, Cicely Saunders Institute; Dr Thomas Osborne and Christina Ramsenthaler, PhD students, Cicely Saunders Institute; Professor Steve Schey, Clinical Lead for Myeloma, King's College Hospital NHS Foundation Trust and Professor of Plasma Cell Dyscrasias, London University; Dr Fliss Murtagh, Cicely Saunders Institute; and Sarah Richard, Myeloma UK.

POS tool (www.pos-pal.org) For staff use Patient number:

IPOS - 5 Staff Version Patient Name: .....................................................................................................

www.pos-pal.org

Name: ............................................................................................................... Date (dd/mm/yyyy):

Patient Number:

Date (dd/mm/yyyy):

IPOS-5 Patient Version

www.pos-pal.org

/ What have been your main problems or concerns over the past 3 days?

What have been the patient's main problems over the past 3 days?

Below are two symptoms, which you may or may not have experienced. For each symptom please tick the box that best describes how it has affected you over the past 3 days.

Please tick the box that best describes how the patient has been affected by the following two symptoms over the past 3 days? Not at all

Slightly

Moderately

Severely

Cannot assess (e.g. Overwhelmingly unconscious)

Pain

Shortness of breath

Not at all

Not at all Has s/he been feeling anxious or worried about his/her illness or treatment?

Over the past 3 days: Always Do you think s/he has felt at peace? Has the patient had as much information as s/he wanted?

IPOS STAFF 3DAY - 5 item version

Occasionally Sometimes

Most of the time

Always

Most of the Sometimes Occasionally time 1

www.pos-pal.org

Cannot assess (e.g. unconscious)

Cannot assess (e.g. Not at all unconscious)

IPOS-5v1-S3-EN 02/03/2015

Severely

Overwhelmingly

Shortness of breath

Have you been feeling anxious or worried about your illness or treatment?

Over the past 3 days:

Not at all 0

Occasionally Sometimes 1

Always

Most of the time

Always 4

Most of the Sometimes Occasionally time

Not at all

Have you felt at peace?

Have you had as much information as you wanted?

Moderately

Over the past 3 days: Over the past 3 days:

Slightly

Pain

On my own

With help from a friend or relative

With help from a member of staff

How did you complete this questionnaire?

IPOS PATIENT 3DAY - 5 item version

www.pos-pal.org

IPOS-5v1-P3-EN 02/03/2015

Person-Centred Outcome Measures (PCOMs) / 29

and acceptability of the IPOS. Some psychosocial aspects were considered differently in the UK and Germany, and versions were identified that worked better in both countries. Considering items from the wider range of perspectives led to deeper consideration of POS items meaning, enabling more detailed refinement (Schildmann et al., 2016). Building from POS assessments we have developed a decision support tool to provide a straightforward guide to help support clinical care and improve evidence-based outcomes for patients with progressive illness and their families (van Vliet et al. 2015). The tool addresses four areas of clinical uncertainty: information needs, family anxiety, depression, and breathlessness. Systematic reviews and two international Delphi rounds, conducted as part of a European Project ‘Euro Impact’ found that good patient care, psychosocial support and empathy, and open communication were central to supporting patients and families affected by all POS concerns as a core requirement. Assessment was recommended for increasing problems (i.e. scores), followed by non-pharmacological interventions and, for breathlessness and depression, pharmacological interventions. Accompanying PCOM implementation guidance was built based on the 8-step International Society for Quality of Life Research framework (van Vliet et al., 2015).

Image: OACC training in the Cicely Saunders Institute.

Need, complexity and cost in palliative care In a systematic review of the capture, transfer, and feedback of PCOMs in palliative care, we identified 184 articles that used 122 different measures in 70,466 patients worldwide. There was strong evidence for the impact of using outcome measures to aid the processes of care, including better symptom recognition, more discussion of quality of life, and increased referrals to appropriate services. There was also evidence of improved emotional and psychological outcomes for patients (Etkind et al., 2015a). The variety of measures used pointed to a need to harmonise around a small number of core measures. The Outcome Assessment and Complexity Collaborative (OACC) project draws on existing psychometric studies of outcome measures in palliative care and has agreed a small and standardised suite of fit-for-purpose measures to transform palliative care for patients and families in South London. The OACC measures reflect the key domains of palliative care and holistic assessment. At its core is IPOS, supplemented with a small number of other relevant measures, including phase of illness and physical function, developed by colleagues in Australia. Use of OACC measures aims to aid team working, drive quality improvement, deliver evidence on the impact of services, inform commissioning and, most importantly, achieve better results for patients and families. Major challenges to ensuring equitable provision of palliative care services across the globe, include the lack of cost-effectiveness studies, and health economic data. These studies are limited by a lack of appropriate measures of both cost and outcome. In the previous triennial report we described how, working with McCrone and colleagues in the Institute of Psychiatry, Psychology & Neuroscience at King’s, we adapted the Client Services Receipt Inventory, to collect information on costs. This inventory is now used in many of our studies. However, there was still a lack of appropriate generic preference-based measures to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions.

30 / Cicely Saunders Institute

Image: The C-CHANGE team.

We first tested whether the commonly recommended generic measure, EQ-5D, could capture palliative outcomes. Our research found that only two dimensions of EQ-5D (pain; and anxiety/depression) had any relationship with standard palliative outcomes, and its other three items missed palliative concerns. Overall the EQ-5D performed poorly at predicting palliative concerns and so, although useful in many other situations, is not suitable for economic evaluation in palliative care (Dzingina et al., 2017b). Therefore, we sought to derive a health-state classification system for economic analysis, using the widely used Palliative care Outcome Scale (POS), as this is valid in many palliative care and patient populations. Data from six studies of 1,011 patients receiving palliative care were combined and, following Rasch and factor analyses, a classification system of seven POS items was derived. A Rasch threshold map identified a set of 14 plausible health states that can be used for the valuation of the instrument to derive a preference-based index (Dzingina et al., 2017b). Currently we are surveying patients and the public to obtain preference weights so the items in this measure (called POS-E) can be used in economic evaluations in palliative care. Alongside this work, C-CHANGE was established through a programme grant and aims to discover the best ways to ensure patientlevel palliative care funding matches individual

patient and family needs (the right resources to deliver the right care). Through integrated work streams we will: •• identify the best way to measure whether someone has more complex or less complex needs when they have an advanced, life-threatening illness; •• measure outcomes in relation to complexity, so that we can show the difference (or not) that palliative care is making; •• develop and validate a patient-centred case-mix classification for adult palliative care provision in England; then •• test different models of palliative care in terms of both effectiveness and cost-effectiveness. The C-CHANGE case-mix classification will be based on focused and specific criteria from the OACC recommended suite of measures (phase of illness, functional status and problem severity) to capture and reflect complexity, and extend across both cancer and non-cancer advanced conditions, and across inpatient, community and outpatient settings.

Person-Centred Outcome Measures (PCOMs) / 31

PCOMs for rehabilitation The UK Rehabilitation Outcomes Collaborative (UKROC) was established through a programme grant to develop a national database for collating and understanding case episodes for inpatient rehabilitation. It includes data from all specialist neurorehabilitation services from across the UK, offering a world-leading example of implementing outcomes for rehabilitation. UKROC has opened the ‘black box of rehabilitation’ by providing information on rehabilitation requirements, the inputs provided to meet them, outcomes and cost-benefits of rehabilitation for patients with different levels of need. The programme involved integrated work streams which have: •• Defined a fully validated set of tools to measure needs, outcomes, complexity, nursing and therapy dependency, function and long term cost and outcome implications. This includes the validation of new and refined measures such as The Northwick Park Therapy Dependency Assessment (NPTDA), which measures therapy interventions, and uniquely reflects both quantitative and qualitative aspects of the inputs provided (including staff time and the different types of intervention) during inpatient rehabilitation (Alexandrescu et al., 2015a). The scale demonstrated

acceptable internal reliability, good construct and concurrent validity, and was responsive to change. •• Mapped where specialist rehabilitation services are provided in England, and the additional resource requirements for managing people with more complex needs. •• Reviewed and compared the casemix, outcomes and payment models in other countries, especially the US and Australia, to understand potential transferability, and mapped the implications of these models to our UK scenario (Turner-Stokes et al., 2015a). •• Developed and tested a weighted casemix classification and payment model that would be appropriate in the context of the UK National Health Service (NHS), with a weighted costing model that reflected the differential treatment costs for people in different services. •• Established a nationwide database for centralised collation and analysis of patient episode data from specialist neurorehabilitation services in the UK, which in addition to being the commissioning data set for NHS England provides, national benchmarking data on quality and outcomes.

Figure 17: Passive function primary goal category (Fheodoroff et al., 2015) Active function primary goal category

55 50

88%

87%

40 35 30 25 20

79%

15 10

86%

100%

60%

5 n=46

Dressing Limb hygiene affected limb

Nail care

Splint application

Therapy/ positioning

Unspeciﬁed

No. of participants setting/achieving goals

Passive function primary goal category 20

15 86% 63%

80% 75% 100%

5 100%

33%

0 n=16

Eating/ drinking

Washing/ dressing

Goal set

Goal achieved

Other ADL Housework/ cooking

Work related

Writing/ typing

Recreation

32 / Cicely Saunders Institute

Figure 18: Composite FAM-Splats for the two units: median scores at admission and discharge (Turner-Stokes et al., 2016b) Liverpool N=88 Safety awareness Concentration

Eating 7

Concentration

Bathing

Memory

Safety awareness

Swallowing Grooming

Orientation

Liverpool PDOC excluded N=75

Problem solving

Toileting

Leisure activities

2 1

Adjustment to limitations

Bladder

Emotional status

Bowels Transfers – bed

Social interaction

Transfers – toilet

Speech Intelligibility Writing

Stairs

Community Mobility

Emotional status

Bowels Transfers – bed

Social interaction

Transfers – toilet

Speech Intelligibility Writing

Transfers – bath

Reading

Admission London N=94

Orientation

Safety awareness

Swallowing Grooming

Concentration

Bathing

Orientation

Dressing upper

Problem solving

2 1

Adjustment to limitations

Problem solving

Toileting

Leisure activities

Bladder

Emotional status

Bowels Transfers – bed

Social interaction

Transfers – toilet

Speech Intelligibility Writing

Transfers – bath

Reading Expression Comprehension

Locomotion

Stairs

Eating 7

Swallowing Grooming

Bathing Dressing upper

Dressing Lower

3 Toileting

2 1

Adjustment to limitations

Bladder

Emotional status

Bowels Transfers – bed

Social interaction

Transfers – toilet

Speech Intelligibility Writing

Transfers – bath

Reading

Transfers – car Community Mobility

Stairs

Memory

Dressing Lower

Leisure activities

Community Mobility

London PDOC excluded N=64

Memory

Transfers – car

Expression Comprehension

Locomotion

Admission

Safety awareness

Bladder

Discharge

Concentration

Toileting

Adjustment to limitations

Discharge

Eating

Dressing Lower

Transfers – car

Expression Comprehension

Dressing upper

4 3

Transfers – bath

Reading

Bathing

Memory

Dressing Lower

Swallowing Grooming

Orientation

Dressing upper

Eating 7

Expression Comprehension

Locomotion

Discharge

Admission

Transfers – car Community Mobility

Stairs

Locomotion

The radar chart (or ‘FAM splat’) provides a graphic representation of the disability profile from the FIM+FAM data. The 30-scale items are arranged as spokes of a wheel. Scoring levels from 1 (total dependence) to 7 (total independence) run from the centre outwards. Thus, a perfect score would be demonstrated as a large circle. These composite radar charts illustrate the median scores on admission and discharge for the two units. The red-shaded portion represents the median scores on admission for each item. The blue-shaded area represents the change in median score from admission to discharge. Clear differences in the pattern of disability can be seen between the two centres.

The research found that the initial costs of rehabilitation are effectively recouped by savings in ongoing costs of care within 19 months of discharge. Patients who are highly dependent on admission to rehabilitation were the most efficient to treat, recouping the costs of rehabilitation in under 14 months (Turner-Stokes et al., 2016b, Turner-Stokes et al., 2016c).

This research has spurred the development and improvement of other improved outcome measures for other conditions in rehabilitation. We have developed and tested patient reported outcome measures to evaluate improvement in the leg to complement previous similar work in arm spasticity. We have worked with others to aid the use of our arm measures, especially the ArmA,

Person-Centred Outcome Measures (PCOMs) / 33

which has now been used in our international studies in Europe, Asia, USA and Australia, and incorporated into UK services for spasticity and arm rehabilitation. To improve measurement of outcomes for the leg, following a systematic review (Ashford et al., 2017) the team conducted a Delphi consultation with clinicians to address content and face validity. Our measure, the LegA, is designed to measure passive and active function following focal interventions associated with spasticity in the lower limb. The next phase will involve formal evaluation of psychometric properties (Ashford et al., 2017). Goal Attainment Scaling (GAS) evaluation in upper limb spasticity (GAS-eous) and leg spasticity (GASleg), have been developed following extensive goal analysis with data from the UK and internationally (Europe, Asia and Australia) through secondary analysis of clinical trials (Ashford et al., 2015a, Fheodoroff et al., 2015, Ashford et al., 2016a). Structured goal setting methods enable goal negotiation between patients and clinicians, to ensure goals set are worthwhile and relevant, and can be evaluated to measure outcome (Figure 17). To further improve our understanding of the inputs into care, the Upper Limb Therapy Recording Tool (ULSTR) was developed and has been applied in collecting costs in both therapy and botulinum toxin interventions in the UK and internationally (Europe, Asia, USA and Australia) through the Upper Limb International Spasticity (ULIS)-III study, see Symptom-Led Research (Turner-Stokes et al., 2016a). The Leg Therapy Schedule – LegTS was developed and has been applied to record therapy interventions and costs alongside the other costs associated with botulinum toxin intervention nationally in the UK (Ashford et al., 2016c). Finally, to improve measurement among people with stroke, we analysed inpatient episode data from 62 specialist rehabilitation units in the UKROC database. The team tested the potential use of the UK Functional Independence Measure (FIM), a global measure of disability scored with the additional 12 items that

formulate the Functional Assessment Measure (FAM), a combined measure called FIM+FAM. The team have developed novel feedback methods for clinical units (Figure 18). The UK FIM+FAM is designed for measuring disability in the brain-injured population, but may have value in aiding care for people with stroke. In this study, the team found that FIM+FAM has a three-factor structure in stroke, similar to the general neurorehabilitation population. It was responsive to change during inpatient rehabilitation, and distinguishes between clinical groups. This tool is important because it extends stroke outcome measurement beyond physical disability to include cognitive, communication and psychosocial function.

PhD student, Clare Ellis-Smith The title of my PhD is ‘The development and preliminary evaluation of a measure to improve assessment and management of Image: Clare presenting at our Knowledge Exchange symptoms and Seminar 2016 concerns of people with dementia in residential care homes’. I aimed to develop the Integrated Palliative care Outcome Scale for Dementia (IPOSDem) and explore its acceptability, feasibility, and likely mechanisms of action of using it in routine care. I joined the Cicely Saunders Institute as the fellowship afforded me an excellent opportunity to do a PhD in a subject that I am passionate about, and with international leaders in palliative care research. Post-PhD, I would like to remain at the Institute and further test IPOS-Dem.

Living and Dying in Society Societies are changing across the globe. Those who are suffering, have profound disability, or are dying, are especially vulnerable. To future-proof palliative care and rehabilitation, we are studying the needs and preferences of vulnerable or overlooked groups and areas: older people, caregivers, preferences and choices, ethnicity, sexual orientation and gender identity, culture, and spirituality. Our findings seek to lead the evidence response to questions around how to meet the needs of the growing aging population, the diverse cultures in our society, and different preferences and priorities, including location of dying.

Living and Dying in Society / 35

Our research responds to global demographic changes, the diverse range of settings in which people live, are cared for, and die, and the methodological challenges of research among people with impaired physical and cognitive function. We have modelled future projections of future palliative care need using routinely collected national death registration data, collected from the Office for National Statistics (Etkind et al., 2017). Annual deaths for England and Wales are projected to rise by 25%; from 501,424 in 2014 (38.8% aged 85+) to 635,814 in 2040 (53.6% aged 85+) (Figure 19). Most of this increase will be among older people. If the upward trend in need for palliative care observed between 2006 to 2014 continues, there will be a 42% increase in need for palliative care (161,842 more people/year, total 537,240). Disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040), cancer (increase from 143,638 to 208,636 deaths by 2040) and increased multimorbidity, will be the main drivers of increased need. These findings indicate that healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness; boosting palliative care across health and social care disciplines. Other countries with similar demographic and disease changes will likely experience comparable rises in need (Etkind et al., 2017).

communication and information provision, combined with routinised and fragmented inpatient care, and restricted patients’ selfefficacy, self-management, choice and decisionmaking (Selman et al., 2017a). Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. We found that palliative care often facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, Figure 19: Estimated number of people requiring palliative care from 2006 to 2040 in England and Wales (Etkind et al., 2017) 650,000

600,000

550,000

Number of deaths

Ageing and Multimorbidity

500,000

450,000

400,000

350,000

300,000 2006

In the International Access, Rights and Empowerment (IARE) studies, we lead an international programme with colleagues in North America and Ireland to better understand the needs of patients aged 65 years and over, how they access and would like to access palliative care, and to improve their timely access to care. In IARE we first studied how palliative care is delivered in London (UK), New York (USA), Dublin (Ireland), and San Francisco (USA). An ethnographic component of the research studied the challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Our analysis of 91 interviews and 340 hours of observational data revealed substantial challenges to empowerment: poor

2010

2011

2012

2013

2014

2020

2030

2040

All deaths as recorded in ONS death registry data, and as estimated in the 2014 ONS mortality projections Projection method 2 (constant proportion): Projected palliative care estimate assuming the proportion of people who die that will need palliative care remains the same as in 2014 Projection method 2 (annual change 2006 to 2014): Projected palliative care estimate assuming the proportion of people who die that will need palliative care continues to rise as per the trend from 2006 to 2014 Projection method 2 (annual change 2011 to 2014): Projected palliative care estimate assuming the proportion of people who die that will need palliative care continues to rise as per the trend from 2011 to 2014.

Projections of overall population palliative care need according to International Classification of Disease-10 estimates. Solid lines indicate estimates based on actual mortality data. Dotted lines indicate projection models. Note: projection method 1 is not presented in this figure, since it produces very similar results to projection method 2 (assuming proportion of palliative care needs constant).

36 / Cicely Saunders Institute

Image: Attendees at the South London CLAHRC awards event (Photo credit: David Tett).

and the support of other clinicians. These findings are relevant for high- and middleincome countries with a growing population of older patients with advanced disease (Selman et al., 2017a). Our research focusing on patients with advanced heart failure found there were few palliative care interventions (Kane et al., 2015a). We have developed clinically relevant modifications to the European Society of Cardiology definition and proposed strategies to address New York Heart Association subjectivity, in order to improve patient identification in clinical settings, thereby helping to improve access to palliative care for this group (Kane et al., 2017). To help us drive this work forward in the future, Dr James Beattie, a Consultant Cardiologist and lead for Heart Failure, has joined us with an Honorary Senior Lectureship, held jointly with the School of Cardiovascular Medicine & Sciences at King’s. Our IARE studies are now focused on understanding the preferences and priorities that patients and families have for care. A mortality

follow-back survey has compared experiences and costs of care in different countries. Longitudinal research is following patients over time who do not access palliative care, to try to understand their preferences, priorities and the drivers of acute hospital use. Our OPTCare Elderly study is a novel randomised controlled trial of early palliative care for frail older people with non-malignant conditions in community settings, at home or in a care home. We have developed and evaluated a new service to better meet the needs of this group. This new service, Short-term Integrated Palliative and Supportive care (SIPScare), was conceived based on the research in OPTCare Neuro (see Evaluating and Improving Care) and the Breathlessness Support Service. It was then developed and trialled in a joint project with Sussex Community NHS Foundation Trust. This builds on our focus of trialling short term early integrated palliative care, to be effective, but also affordable and sustainable within workforce constraints in current health care systems.

Living and Dying in Society / 37

Figure 20: Final transition to place of death by usual place of care in the last 3 months of life for people aged 75 and older (Bone et al., 2016a) 300

250

Number of patients

To understand how well existing care was working and any gaps, especially in terms of transition to hospital, we conducted a mortality follow-back study of 443 older people who died in Southern England (Bone et al., 2016a) (Figure 20). Factors associated with transition to hospital and dying there were: experiencing severe breathlessness in the last week of life, and having a primary diagnosis of respiratory disease. Conversely, older people who had discussed end of life care preferences, or who identify a key health professional who they can rely on, were less likely to transition to hospital (Bone et al., 2016a).

105

200

150

19 10 120

100

41 118

Our findings indicated a need to invest in evidence-based community breathlessness services for older people to reduce end of life transition to hospital. This underlines the importance of our Breathlessness Programme (see Symptom-Led Research). There was also a need to assign a key healthcare professional, skilled in coordinating care, facilitating complex discussions and in care planning with older people and their family; and to also increase training for community health

16 Home

Care home

Hospital

2 Hospice

Usual place of care End-of-Life Transition to Hospital End-of-Life Transition to Hospice End-of-Life Transition to Care home No End-of-Life Transition

Figure 21: Model of Short-term Integrated Palliative and Supportive Care (SIPS) (Bone et al., 2016b)

Illness Trajectory

Time

Function

High

Death

Low

Indications for referrals to specialist palliative care include: complex symptoms (including emotional distress); readiness to discuss future care; increased health service utilisation; and unmet needs Ongoing general practitioner and community nursing team support GP referral to specialist palliative care Short-term integrated palliative and supportive care (SIPS) Integrated working between specialist palliative care and generalist health and social care providers with: • Short-term service of 1–3 visits • Patient and carer holistic assessment • Opportunity for discussion about end of life • Single point of contact to palliative care team for generalist practitioners • Skilled key worker to be point of contact for patient/carer

Discharge to primary care Potential beneﬁts • Improved symptom management including psychosocial such as anxiety • Improved carer wellbeing and management of carer burden • Reduced hospital admission

38 / Cicely Saunders Institute

PhD student, Anna Bone Having previously worked as a research assistant in the department, I was delighted to transition to PhD in 2016. My PhD project is a mixed methods study that examines the influences of older people’s emergency hospital attendance towards the end of life. This is an important policy issue, given that emergency hospital attendance for older people is common, costly, and an indicator of poor quality care. The Cicely Saunders Institute offers a supportive environment to develop my skills and expertise in this area. In the future, I plan to bring this expertise to a career in public health.

care professionals in communication of difficult conversations and anticipatory care planning for older people with uncertain illness trajectories (Bone et al., 2016b). A qualitative interview study ascertained perspectives of stakeholders on the development of SIPScare for older people with frailty and non-malignant multimorbidities in the community. Stakeholders considered specialist palliative care acceptable for older people with non-cancer conditions (Bone et al., 2016b). Stakeholders reported that SIPScare could benefit patients and families, including in management of complex symptoms, planning future care, and providing reassurance to carers. It was suggested that referrals should start early, when the person is vulnerable to decline, to establish a relationship with the team, as well as when a person’s health is deteriorating. It was also considered important to have a single point of access to palliative care services for older people and carers, and also for referring to health services. Combined, these findings helped develop the theoretical underpinning and key components of SIPScare (Figure 21), and the randomised controlled trial.

PhD student, Simon Etkind The older population is rapidly growing, and alongside this, frailty and chronic illness are increasing in prevalence. To deliver personSimon presenting at one centred models of of our PPI Workshops. care in line with the preferences of this growing population group, we need to understand more about patient preferences. My PhD therefore aims to describe and explore the influences on care preferences, and the stability of care preferences, in frail older people with experience of acute healthcare. I’m undertaking a mixed-methods study to achieve this aim and am in the process of collecting data at three sites in South London. While developing the new integrated service for older people, we also identified a need to better support staff providing general care. The Symptom and Psychological Assessment and Communication Evaluation (SPACEtoolkit) is a ‘new’ toolkit that uses existing measures/ tools to manage uncertain recovery for older people admitted to a community hospital to improve communication and reduce anxiety and distress for patients and families. This work builds on the OPTCare Elderly findings, and a tool developed in our earlier research (described in the 2011–14 Triennial Report); the PACE – Psychological Assessment and Communication Evaluation for patients with uncertain recovery in intensive care units developed by Higginson and colleagues (DOI:10.1186/1741-7015-11-213).

The Use of Routine Data to Understand, Evaluate and Improve Care Our analysis of routine data offers an efficient way to understand, and in some instances evaluate, services, treatment and care in real time. This secondary research compliments our empirical studies, as we are able to better

Living and Dying in Society / 39

Figure 22: Time trends in percentage of adult deaths in England that occurred in hospices, by underlying cause of death, 1993-2012 (Sleeman et al., 2016a)

Our GUIDE_Care project (geographical understanding of variation in place of death: the role of socio-demographics, clinical & care service factors and end of life care improvement), studied where people die and what factors influence this, using all data in England from 1984 to the present time, with information on over 13 million people. Where people die is an important quality indicator for end-of-life care. Multivariable analysis found that hospital deaths for all causes combined were more likely for people aged 75+ years (proportion ratios (PRs) 0.863–0.962 vs. aged 25–54 years), those who lived in London (PRs 0.872–0.988 vs. North West), those who were divorced, single and widowed (PRs 0.992–1.001 vs. married), those who lived in more deprived

Gastro-intestinal cancer

Bladder, kidney cancer

Liver, pancreas cancer

Haemoatological cancer

Lung

Other cancer

Breast, ovarian cancer

Non-cancer

Prostate cancer

All causes

2012

2011

2010

2009

2008

2007

2006

2005

2004

2003

2001

2002'

2000

1998

1999'

1997

1996

understand the experiences of people beyond those recruited to studies, using a very clear population base. We use anonymised data, and adhere to stringent safeguards as to how data is stored, analysed and reported, as recommended by and agreed with the UK Office for National Statistics (ONS). Our routinely collected data describes the variations in place of death, end of life care outcomes and the factors that affect these, in order to guide ways to reduce inequality and improve the quality of care at the end-of-life.

1995

1994

1993

Image: Dr Catherine Evans, HEE/NIHR Senior Clinical Lecturer in Palliative Care and Nursing.

Percentage of deaths in hospice stratiﬁed by primary diagnosis

Hospice deaths accounted for 3.6% of all deaths in England in 1993 and rose to 6.0% of all deaths in 2012. In the period, 446,615 adults died in in-patient hospices. The proportion of cancer deaths that occurred in hospice was highest in breast/ovarian cancer (16.0% of deaths in 1993, 21.6% of deaths in 2012) and lowest among people with haematological malignancies (6.5% of deaths in 1993, 11.0% in 2012). Very few people with non-cancer conditions died in hospice (0.2% of deaths in 1993, 0.8% in 2012).

areas (PRs 0.929–1.000 more deprived vs. less deprived) and those who died in autumn, winter or at New Year (Gao et al., 2014a). We hosted a series of workshops, involving international experts, to place our findings in an international and policy context and to discuss the way forward, especially how to analyse and better use routine data (Davies et al., 2016). More detailed analysis with this data found that children and young people with cancer mostly died in hospitals or at home with little change in recent years, despite policies to improve home care, and that those living in more deprived

40 / Cicely Saunders Institute

Figure 23: Time trends of percentage of deaths in hospital by year in England for chronic obstructive pulmonary disease (COPD) and interstitial pulmonary disease (IPD) stratified by number of comorbidities. Standardised by age and sex against the United Nations mortality standard population (Higginson et al., 2017) Comorbidity IPD

Percentage of deaths in hospital, stratiﬁed by number of comorbidities

Percentage of deaths in hospital, stratiﬁed by to number of comorbidities

COPD

75 70 65 60 55 50 45 40 35

75 70 65 60 55 50 45 40

2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Year of death for people with COPD

2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

Year of death for people with IPD

4+ comorbidities

1 comorbidity

4+ comorbidities

1 comorbidity

3 comorbidities

No comorbidity

3 comorbidities

No comorbidity

2 comorbidities

areas were less likely to die at home (Gao et al., 2016a). At the other end of the age spectrum, our population based observational study of centenarians found that compared with younger age groups, centenarians were more likely to die from pneumonia and ‘old age’ and less likely to die from cancer and heart disease. The annual number of centenarian deaths doubled over the last 10 years. About a quarter of centenarians died in the hospital, a quarter died in a nursing home, and a third died in a care home without nursing; only one in ten centenarians died at home. Death in the hospital was also associated with having four or more contributing causes of death and with living in a deprived area. Living in an area with a higher care-home bed capacity was associated with a lower risk of dying in the hospital (Evans et al., 2014a). We led work on using data to better understand the contribution of hospices and how this changed over time (Sleeman et al., 2016a). The annual number of hospice deaths increased from

2 comorbidities

17,440 in 1993 to 26,032 in 2012, accounting for 3.4% of all deaths in 1993 and 6.0% in 2012. Just 5.2% of all hospice decedents had non-cancer diagnoses, though the likelihood of non-cancer conditions increased very slightly over time, suggesting that more needs to be done to support people with diseases other than cancer. Worryingly, the likelihood of hospice decedents being resident in more affluent areas increased over time (Sleeman et al., 2016a) (Figure 22). Our research analysed the trends in hospital deaths for people affected with chronic lung disease, bridging with our research on breathlessness. Our 14-year population-based study found that multimorbidity plays a major role in where people with chronic lung disease die, and its effect is increasing over time. Hospital deaths did not fall for people with two or more comorbidities suggesting that the UK End of Life Care Strategy is failing to reach people with multimorbidity and this gap is widening over time (Higginson et al., 2017) (Figure 23).

Living and Dying in Society / 41

Figure 24: Environmental, illness-related, and demographic factors associated with ED attendance in last year of life for people with dementia, n=4,867 (Sleeman et al., 2017)

2011-2012 2010-2011 2009-2010 Care Home residence Time since last mental healthcare contact

ENVIRONMENTAL FACTORS

2012-2013 Year of death ref: 2008-2009

MMSE ILLNESS RELATED FACTORS

Living conditions Other mental health problems Depression Physical health Lewy body dementia Other dementia

Ref: Alzheimer’s Disease

Unspeciﬁed dementia Vascular dementia

IMD 5 IMD 4

Ref: IMD 1 (most deprived)

IMD 2 Ethnicity not known Other ethnicity

Ethnicity ref: White British

African Caribbean Other white

DEMOGRAPHIC FACTORS

IMD 3

Age at death Male

0.6

0.8

Lower risk ED attendance

1.0

1.2

1.4

1.6

1.8

2.0

Greater risk ED attendance

Red – environmental factors; purple – illness relative factors; green – demographic factors. Abbreviations: ED, Emergency Department; IMD, Index of Multiple Deprivation.

Although some of the variation in place of death is explained by disease or person focused factors, the findings regarding multimorbidity and the unexplained aspects prompts a further investigation for other plausible factors, such as the nature of services (Gao et al., 2014a). With support from the South London NIHR CLAHRC we have developed a robust way to measure the geographical accessibility of services (Pearson et al., 2017). We are extending this work nationally, with our GUIDE_Care Services

project to explore the role of service factors (e.g. service provision, proximity, capacity, utilisation and need) on place of death. In parallel with GUIDE_Care, we explored the prescribing pattern of multiple strong opioids in primary care using the world’s largest health record database – the Clinical Practice Research Datalink. We found that doctor’s prescribing behaviour plays a dominant role in multiple opioid prescribing at the end of life; highlighting

42 / Cicely Saunders Institute

the need for training and education that goes beyond the well-recognised WHO approach for clinical practitioners (Gao et al., 2014b). We also examined emergency department attendance towards end of life in cancer patients, using the NHS Digital Hospital Episode Statistics linked to the ONS mortality database. In an analysis of 124,030 patients we found those with greater comorbidity, lung or head and neck cancer, and a higher number of previous emergency department visits were more likely to visit the emergency department multiple times in the last month of life (Henson et al., 2017). Previously reported socio-demographic factors (men, younger age, Black and Asian ethnic minority groups, low socio-economic status) are also confirmed for the first time in a UK population (Henson et al., 2017). Our routine data stream is being expanded through development of national and international collaborative projects. For example, with the Psychosis Theme, CLAHRC South London and the Institute of Psychiatry, Psychology & Neuroscience, King’s College London, we have linked clinical and administrative data to investigate end of life care in dementia. We showed that almost half of people with a clinical diagnosis of dementia do not have it recorded on their death certificate, and that there are systematic biases in whether or not dementia is recorded, including according to place of death (Perera et al., 2016). Despite the rise in

recorded prevalence of dementia from mortality data, the population burden of dementia is still underestimated. In a retrospective cohort of 4,867 patients, we examined emergency department attendance as an indicator of overly aggressive care, and showed over three-quarters (78.6%) had at least one attendance during their last year of life PhD student, Joanna Davies My PhD is about understanding the social determinants of outcomes important to older people at the end of life. It is estimated that more than half of people over the age of 60 experience some form of multiple social disadvantage including poor literacy, numeracy, housing issues, or problems related to low social support or integration. Through an analysis of the English Longitudinal Study of Ageing, my aim is to unpick the relationship between old-age, poor health, social disadvantage and outcomes at the end of life, in order to highlight the most important areas for future interventions directed at making care at the end of life more socially equitable.

Figure 25: LGBT experiences when facing advanced illness: considerations for the clinical encounter (Bristowe et al., 2017a) Clinical Skills

(ii) Interactional or service level barriers and stressors

(i) Holistic Care Needs: physical, psychosocial and spiritual needs, support networks and relationships (iii) internalised or invisible barriers and stressors which shape (v) preferences for disclosure and exploration of identity

Knowledge and Attitudes

(iv) Interactional or service level facilitators

Living and Dying in Society / 43

(mean 2.13, range 0–54). This increased over the period studied and was linked to demographic, illness related and environmental factors, suggesting policy makers must pay attention to a broader range of indicators of poor end of life care alongside the place of death (Sleeman et al., 2017) (Figure 24).

Sexual Orientation and Gender Identity Lesbian, gay, and bisexual and/or trans (LGBT) people constitute minority groups with specific healthcare needs, including: greater all-cause mortality; higher rates of mental illness; more risk behaviours linked to discrimination; increased risk of life-limiting illnesses; increased isolation; and potentially increased palliative care needs. Partners are therefore more likely to be bereaved and, with higher rates of mental illness, may have worse bereavement outcomes. Despite protection under the UK Equality Act (2010), experiences of discrimination for LGBT people are common in healthcare, resulting in reluctance to access healthcare, and share sexual orientation with healthcare professionals. There is a need to end health disparities and discrimination for LGBT people facing advanced illness. Our ACCESSCare project aimed to improve demand for and supply of palliative care for people who identify as LGBT and are in the later stages of a life-limiting illness. It was a national qualitative interview study of 40 people from across the UK who identify as LGBT and are in the later stages of a life-limiting illness, their informal caregivers (partners, friends or relatives) as well as with bereaved caregivers of people who died from a progressive illness or condition. The research identified barriers to accessing care at multiple levels: internalised, interactional and service level. While basic clinical needs of LGB people are common to everyone facing advanced illness, for trans people, there are additional clinical considerations (Bristowe et al., 2017a). LGBT people may also face further societal stressors, increased isolation, family estrangements and legal concerns, all contributing to additional stress at a time of increased vulnerability. We also identified facilitators to good care at a service and interactional level.

Figure 26: Acceptance–disclosure model of LGBT bereavement experiences (Bristowe et al., 2016) Spoken

Overt acceptance

Overt exclusion Not accepted

Accepted Unspoken acceptance

Invisibility

Unspoken

From the interviews we identified 10 simple lowcost recommendations for individual healthcare professionals and healthcare institutions to improve care for LGBT people, for example, explicitly including partners and/or significant others in discussions and avoiding using heterosexually framed or assumption laden language (Bristowe et al., 2017a) (Figure 25). The team have presented the findings to over 1,000 healthcare professionals, health services researchers and policy makers from across the UK. The ACCESSCare study informed a Marie Curie publication ‘“Hiding Who I Am”: the reality of end-of-life care for LGBT people’. The Care Quality Commission (CQC) Thematic Review, ‘A different ending – addressing inequalities in end-of-life care’, was presented at national parliament, and was used to develop a public mass media resource for people who identify as LGBT facing advanced illness, and those close to them (partner, friends or relatives). We completed a systematic review of the bereavement experiences of LGBT people who have lost a partner. The review recognised that people who identify as LGBT and lose a partner face additional barriers and stressors in bereavement, and that their bereavement experience will be shaped by the degree to which their relationship is acknowledged and disclosed (Bristowe et al., 2016) (Figure 26). Research into bereavement outcomes for LGBT people

44 / Cicely Saunders Institute

has previously been limited to the context of HIV/AIDS. The newly funded ACCESSCare B study is the first population based study of the bereavement outcomes of LGB people beyond the context of HIV/AIDS. We are also supporting a sister project in Zimbabwe, which examines healthcare and palliative care experiences of key populations LGBTI (lesbian, gay, bisexual, trans and intersex) people and sex workers (see Partnerships and Engagement). Sixty individuals from key populations shared their experiences and described considerable unmet needs and barriers to accessing basic healthcare due to discrimination regarding key population status, exacerbated by the sociopolitical/legal environment. Three main themes emerged: key populations’ illnesses were attributed by health care professionals to their previous behaviour; equal access to healthcare is conditional on key populations conforming to ‘sexual norms’; and perceptions that healthcare workers were ill-informed about key populations, and that professionals’ personal attitudes affected care delivery (Hunt et al., 2017). Participants felt unable to discuss their key population status with healthcare workers, and needs were expected to be met almost entirely by their own communities. This is one of very few studies of healthcare access beyond HIV for key populations in Africa. Discrimination towards key populations discourages early diagnosis, limits access to healthcare/ treatment and increases risk of transmission of infectious diseases. Key populations experience unnecessary suffering from untreated conditions, exclusion from healthcare and extreme psychological distress. Education is needed to reduce stigma and enhance sensitive clinical interviewing skills. Clinical and public health implications of discrimination in healthcare must be addressed through evidence-based interventions for professionals, particularly in contexts with sociopolitical/legal barriers to equality (Hunt et al., 2017).

Partnerships and Engagement

46 / Cicely Saunders Institute

The Centre for Global Health Palliative Care The launch of our Centre for Global Health Palliative Care marks the achievements of 15 years of partnerships around the world to carry forward the vision of Dame Cicely and of the Institute. The Institute has been a WHO Collaborating Centre for Palliative Care, Policy and Rehabilitation since 2008. We have produced freely available global resources for the WHO, ‘Palliative Care: The Solid Facts’ and ‘Palliative Care for Older People: Better Practices’. More recently, we have been actively engaged as members of the Technical Advisory Group for the WHO, tasked with responding to the World Health Assembly’s resolution on palliative care, to co-develop and endorse the latest guidance on Building Integrated Palliative Care Programs and Services, with a focus on evaluation of services. Underpinning our global research and education is our vision of partnership to build local capacity and evidence to reduce inequality in palliative and end of life care. We have adapted the WHO public health palliative care strategy to ensure that evidence underpins policy, education and drug availability. Our global health activities span the

Image: Members of the TOPCare trial team.

range of activities in this report – postgraduate education, with MSc and PhD students from Africa, Latin America and Asia; primary research, with ongoing partnerships among Universities, NGOs and clinical services around the world; and development, validation and implementation of local versions of POS (the Palliative care Outcome Scale) to measure and improve care (Figure 27). Here we present some highlights from our global health partnerships.

Figure 27: Global research and partnership activity

9000 POS users in 126 countries

Research partnerships and outputs

GlobalCARE academic leaders

Partnerships and Engagement / 47

Figure 28: Multilevel modelling of primary and secondary outcomes from the TOPCare randomised trial of palliative care in Kenya (Lowther et al., 2015), n=120 Coefficient (95% Cl)

p value

–0.01 (–0.36 to 0.34)

0.95

Physical health subscale (in quartiles)

0.44 (0.02 to 0.91)

0.06

Mental health subscale (in quartiles)

0.61 (0.13 to 1.10)

0.04

Primary outcome Pain Secondary outcomes MOS–HIV (health-related quality of life)

GHQ-12 (psychiatric morbidity; in quartiles)

–0.50 (–0.91 to –0.03)

0.04

APOS (multidimensional palliative care needs) Total (in quartiles)

0.69 (0.26 to 1.12)

0.002

Symptoms

–0.05 (–0.39 to 0.29)

0.78

Worry

–0.37 (–0.09 to 0.83)

0.11

Ability to share feelings (in quartiles)

0.93 (0.28 to 1.57)

0.005

Feeling life worthwhile (in quartiles)

0.23 (–0.18 to 0.93)

0.52

Feeling at peace (in quartiles)

0.37 (–0.18 to 0.93)

0.19

Help and advice for family to plan for the future (in quartiles)

0.78 (0.28 to 1.28)

0.002

MOS-HIV = MEdical Outcomes Study–HIV. GHQ-12 = General Household Questionnaire-12. APOS = African Palliative Outcome Scale.

TOPCare is the world’s first randomised controlled trial of a palliative care intervention in a low or middle income country (Lowther et al., 2015). It was a mixed methods trial of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy in Kenya, in collaboration with the University of Nairobi, Bomu Hospital and funded by the Diana Princess of Wales Memorial Fund. Building on our prior evidence of palliative care-related problems among people living with HIV in sub-Saharan Africa (Harding et al., 2014a), we designed an intervention that used existing clinical nurses to deliver palliative care, integrated within the clinic appointment. The trial tested whether receipt of palliative care

in addition to standard HIV care, improved pain scores more than standard care alone in 60 HIV positive patients on antiretroviral therapy (ART). Pain was unchanged, but the intervention significantly improved quality of life, mental health and psychosocial concerns compared to existing standard care (Lowther et al., 2015) (Figure 28). Work is needed to address any pain and symptom management gaps in this intervention. This study exemplifies the value of our high/low income country collaboration to share best methods and identify common areas of clinically important research. Ongoing projects include developing and testing of a novel community based intervention of integrated palliative care to improve person-

48 / Cicely Saunders Institute

centred outcomes of people living with HIV/ AIDS in Ghana. Our collaboration with the WHO’s STOP TB campaign and the World Hospice Palliative Care Alliance informed the world’s first declaration on TB and palliative care. The recent WHO END TB strategy includes palliative care for the first time. Our work has identified the most burdensome problems and the palliative care needs of patients admitted with drug-resistant and drug-susceptible TB, by utilising our tool; the African APCA POS. This study, run from University of Cape Town and the Hospice Palliative Care Association of South Africa found that their worst problems were pain (60.5% of 114 patients reporting the worst two responses on the 0-5 APCA African POS range) and worry (42.1%). Problems were worst for those admitted with drug susceptible TB due to the health policy of admitting all patients with drug resistance (Harding et al., 2016a).Under our BuildCARE Africa programme, in partnership with Hospice Africa Uganda, we are now conducting the first clinical trial of palliative care for patients with drug resistant TB. Internationally, the POS and IPOS continue to gain interest (see Person-Centred Outcome Measures). The process of linguistically validating measures is lengthy. We are currently supporting 16 international teams with translations and cultural adaptations of the IPOS. The POS is available for free download in 13 languages other than English, and the IPOS in 5. The POS development team organise regular workshops for professionals in palliative and end of life care, aimed at clinical staff and researchers, to equip participants with the necessary skills and knowledge to implement the POS family of training measures. At the Spring 2017 POS workshops, we welcomed teams from Taiwan, China, Sweden, Poland, Spain and France. The African version of POS has been successful due to enormous local engagement and support, with advocacy bodies, clinical services and researchers routinely implementing the measure. Within Asia, Vietnam has been pioneering an adapted version, and Greater China is currently developing local programmes to adapt and implement POS. Around the world the use of outcome measurement has enabled palliative care

Image: Nurse Bhodenl Chanjeri of Island Hospice in Zimbabwe uses the APCA African POS to assess a patient in her home.

Images: GlobalCARE Vietnamese Fellows and MSc Alumni, Dr Huyen Bui (left) and Dr Duong Le Dai.

to translate its core values of person-centeredness and multidimensional care into simple core outcome measures. The use of these measures enables us to demonstrate the effectiveness and cost effectiveness of the care we deliver. A unique fellowship training programme between the UK, Ireland, USA and Vietnam, funded by Cicely Saunders International and The Atlantic Philanthropies, has provided full

Partnerships and Engagement / 49

scholarships for two outstanding candidates from Vietnam. Dr Huyen Bui and Dr Duong Le Dai spent a year at the Institute attaining their MScs, while also benefitting from cross-national fellowship development activities. The Fellows have been analysing original datasets generated by an original study to develop and validate a Vietnamese version of the POS, led by Dr Eric Krakauer from the Harvard-Vietnam Palliative Care Partnership, Dr Van Anh in Vietnam and Professor Harding. Dr Huyen Bui is now leading a new paediatric palliative care service in Ho Chi Minh. The BuildCARE Africa programme is a capacity building programme that is developing new academic leaders through a PhD and mentored research scheme. Eve Namisango (Research Director, the African Palliative Care Association) is undertaking her PhD at the Institute. Her thesis is examining the psychometric properties of the Children’s POS (C-POS), the world’s first palliative outcome measure for children and young people. This was developed and validated with the African Palliative Care

PhD student, Mary Abboah-Offei People living with HIV/AIDS experience severe symptom burden and while on antiretroviral therapy, these patients have worse health related quality of life compared to the general population. Integrating palliative care with HIV/AIDS care could improve person-centred outcomes as palliative care focuses on holistic assessment of physical, psychological, spiritual and social symptoms, and these assessments are used for collaborative care planning for HIV/AIDS patients. For my PhD I will develop and test a novel community-based integrated palliative care intervention, to improve person-centred outcomes for people living with HIV/AIDS.

Association, initiated by Professor Julia Downing, a visiting fellow.

Public Involvement, Engagement and Outreach Patient and Public Involvement (PPI) in research is when research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. By ‘public’ we mean patients, families, carers, and people who use health services. PPI is increasingly important to ensure research follows the priorities of individuals. This is particularly important for palliative care and rehabilitation research, which are holistic and person-centred specialties. Our approach to PPI is guided by the following core aim: “Palliative care and rehabilitation put patients and their families at the heart of care. We want the work of the Institute to reflect this by involving patients, carers and the public in our research. We aim to facilitate meaningful PPI, which will improve the relevance, quality and impact of our research, and ensure that research is focused on the needs and priorities of patients, carers and families. A secondary aim is to use PPI to aid clinical service development, and improve the quality of clinical services.” The Institute has developed and implemented a PPI strategy to deliver our core aim, undertaking and evaluating innovative PPI activities to form a collaborative model of PPI (see Figure 29). Over the past 3 years we have developed a programme of activities comprising PPI workshops, an online forum, and a series of engagement events. Our strategy follows principles agreed in an earlier expert consultation with local researchers and PPI representatives (Daveson et al, 2015). It asserts that PPI should improve the relevance, quality and impact of our research, and ensure that research is focused on the needs and priorities of patients, carers and their families. The three key underlying principles which will help us to achieve this are: promoting early involvement, a high degree of flexibility in the methods used and promoting the contribution of patient and public involvement representatives to the research process.

50 / Cicely Saunders Institute

Figure 29: Collaborative model of Patient and Public Involvement (PPI) activities, evaluation and oversight

Activity oversight and leadership: PPI Strategy Group (PPI, researcher and academic members) reporting to the Academic Clinical Executive Group and working with the Institute PPI group and PPI Online Forum

Recruit and engage PPI members Build skills in PPI Training for new PPI representatives

PPI Coordinator to manage delivery, evaluation and review (funding required for post)

Researcher Methodological Skills training on PPI, 1:1 advice, PPI resources

Engagement events with patients and the public on palliative care and rehabilitation to widen reach and PPI involvement

Online Forum to widen reach and impact of PPI Newsletter to disseminate activity and achievements

PPI Workshops to build collaborations

Collaborations across the research/clinical quality improvement journey

PPI Project Advisory Groups for research studies Evaluate the processes and outcomes of interactions

PPI email distribution list for Institute activieis

Work with PPI partners: local (KHPs); regional (CLAHRC SL); and national (INVOLVE)

Rapid response PPI email list to connect researchers, clinicians and PPI members

Systematic evaluation of the processes and outcomes of PPI with annual reporting to the ACE, publications, and conference presentations

We use a collaborative model to translate the PPI aim and principles into practice, highlighting organisational, individual and PPI representative responsibilities (Figure 29). We continue to integrate and promote PPI across the research journey, to build skills in PPI by running regular training for researchers, and to engage members of the public and encourage them to become involved with our research. We will also continue to evaluate the impact of PPI work on the research conducted at the Institute, including an annual review of PPI activity, and evaluations of our workshop events and online forum. PPI workshops

Active patient and public involvement is at the core of our research, and is an essential and valued aspect of our work. PPI representatives

regularly offer their time at ‘PPI workshops’ to advise and collaborate with the Institute at all stages of our research. Our workshops provide an opportunity for PPI representatives to learn more about and discuss topics within palliative care research, and a platform for researchers at the Institute to present new and existing research to gain feedback and insight from PPI experiences. Our workshops comprise: •• A themed section, which includes teaching and sharing knowledge with PPI members in order to stimulate discussion and understanding on palliative care and the challenges surrounding research in this area. Topics are selected by PPI representatives to enhance relevance and create engaging

Partnerships and Engagement / 51

Image: The team at the 2016 ‘Know your CLAHRC’ Awards, where the online forum was awarded ‘Most Innovative Patient and Public Involvement Activity’ (Photo credit: David Tett).

workshops. Topics have included what is meant by a ‘difficult conversation’, and an overview of the research approvals process. A PPI representative commented “Tremendously informative day; very mentally invigorating and so many plans to help PPI further” (PPI representative, 2017). •• A Dragon’s Den session, where researchers and clinicians from the CSI present their work to PPI panels to gain feedback on, for example, how to engage patients in the work or their research plans. This is also an opportunity to recruit PPI representatives to study advisory groups. Feedback from these sessions suggests they are useful to all: “It was good to hear real life stories around communication and hear what is important to patients and families. This is really relevant to the research project I work on” (Researcher, 2017). •• A feedback session, in which progress and changes made based on previous PPI input are presented to the group to highlight the difference PPI makes. One participant noted

that “I always feel I’ve made a difference at the workshops” (PPI Representative, April 2017), and a researcher commented that “It felt a supportive environment to share our study design & get useful feedback” (Researcher, June 2016). To date, eight PPI workshops have been held, with an average of 11 PPI members and 8 researchers per workshop. 29 different research projects have been presented at the workshops, most of which have been at an early stage, allowing PPI to shape them as per our core aim. Several projects have been presented more than once, demonstrating the difference PPI has made to them, and allowing feedback on changes made at the first session. PPI online forum

Clear communication and flexibility are a key part of our strategy for successful PPI, and our PPI representatives highlighted that attending face-to-face events could be difficult for some due to health status, caregiving responsibilities, and/or other commitments. It was suggested that

52 / Cicely Saunders Institute

we develop an online forum to allow increased flexibility. With continuous input from PPI representatives, we developed a working template for a departmental online PPI forum, which was launched in June 2016. The CSI Public Involvement Forum and website (www.csipublicinvolvement.co.uk) is the first of its kind in palliative care and rehabilitation research. It is centred around discussion forums where users can post comments and questions about research, but the platform has greater capabilities, including document sharing facilities, so that researchers can also upload materials requesting members’ feedback. The discussion forums also serve as an ‘idea-generation’ space where service users can post ideas for research priorities, and a ‘news board’ with latest research news and opportunities. With over 90 registered users, outputs have included valuable discussions around topics such as ‘feeling safe’ and ‘difficult conversations’, contributions to successful grant/fellowship applications, recruitment of new members to project advisory groups, and feedback on study materials (e.g. patient information leaflets, recruitment posters). This success was recognised in the 2016 ‘Know your CLAHRC’ Awards, where the online forum was awarded ‘Most Innovative Patient and Public Involvement Activity’. A mixed methods evaluation was built in to the forum at the development stage, to ensure we are able to improve it, and share our learning with others seeking to develop online patient and public involvement methods in research. Preliminary results suggest the importance of going beyond the basic functionality of the forum, and utilising some of the wider capabilities of the platform to ensure that the environment created is both engaging and empowering for PPI members and researchers. Collaborations

We share our innovative PPI activities through our work with the CLAHRC South London PPI theme. This work allows researchers from across South London to share PPI experience and learning, providing an opportunity for dissemination and wider impact. We support the synergy of resources and outputs across different health themes, identify best practice and sharing of best practice, and assist in annual CLAHRC events. The PPI Strategy Group are

Image: Professor Irene Higginson speaking with a patient.

continuously developing further ideas of how we can collaborate with other local and national organisations that focus on PPI. Therefore, we have also collaborated with the Biomedical Research Centre and Research Design Service in terms of our biannual workshops, developing training programmes and wider PPI work (e.g. coproduction in research). PPI Engagement events

To develop the engagement aspect of our PPI Strategy, we have developed a series of engagement events, to showcase our research, engage people in the area of palliative care, raise our profile, and attract new PPI representatives. The first of these events was a film screening and high-profile panel discussion, titled a ‘Conversation Starter’. For this event, which coincided with the national UK Dying Matters week, we aimed to promote and encourage conversations around death and dying, and highlight relevant aspects of our research. The Conversation Starter, funded by King’s College London and the Wellcome Trust Public Engagement grant scheme and in collaboration with the King’s Cultural Institute, was attended by a varied audience of over 100 people. Following an introduction by Baroness Julia Neuberger, the film ‘Two Weeks’ was screened, a bitter-sweet comedy depicting a family’s struggle to accept their mother’s advancing illness, intercut with a mother’s own reflections on her life and her family. This was followed by a discussion, where panel members and the audience reflected on the challenges around family dynamics at the end of life highlighted by the film, and the role of palliative

Partnerships and Engagement / 53

Image: PPI Workshop (Photo credit: David Tett).

Image: The first of our series of ‘Conversation Starter’ events.

care professionals in providing a facilitative role. Evaluation of the event, taking the form of ‘clapper boards’ demonstrated the conversations the event had started. One attendee stated that “there is a need for more people to engage in discussion about the subject without feeling uncomfortable”, and another was motivated to “sort out practicalities so everything is in place for when I die.” A third attendee wanted to see more discussion of “how society will care for people dying without the support of families.” In all, 92% of attendees said they would attend a similar event, and we will take this forward by planning a series of Conversation Starter events. A further event, planned for September 2017 at the CSI, and comprising a research showcase, will allow us to engage a larger number of people with our work, as per our strategy.

palliative care, using the hashtag #allmylifeQs. Content on other social media platforms, including blogs, vlogs and podcasts, also contributed to the success of the campaign. Please see Education and Capacity Building for our work developing elearning and our YouTube channel.

Online engagement With around 6,500 followers, the Institute’s Twitter account (@CSI_KCL) has become an essential platform to engage key audiences with our work. We run an online journal club via Twitter, featuring internal and external papers of the month chosen by academics and clinicians within the department, based on their scientific, clinical or methodological value. Throughout 2017, we joined with international partner organisations, including the Salzburg Global Seminar, eHospice, the African Palliative Care Association and the European Association for Palliative Care, to run a campaign promoting dialogue around a series of questions relevant to

Sylvia Bailey, PPI Representative After my cancer diagnosis and treatment, I had an urge to give something back. Being a lay representative in research is rewarding and satisfying, on occasions you feel as if you have achieved something, changed something, or made a difference and learnt something new. It can also be challenging, as you worry whether you know enough, are worthy of representing others, or are making sure you are expressing the views of not only yourself but other patients and carers you are in contact with. You hope PPI makes a big difference, so that is why you do it. I can honestly say all at the Cicely Saunders Institute show great enthusiasm for PPI involvement, and make patients and carers who visit you feel valued and welcome.

Education and Capacity Building Our principal remit in building capacity in palliative care and rehabilitation is to provide high quality, evidence-based learning opportunities to health and social care professionals, irrespective of their work setting, and to build talent among our staff across the Cicely Saunders Institute and its partners.

Education and Capacity Building / 55

PhDs in Palliative Care and Rehabilitation The Institute has a vibrant and enthusiastic group of doctoral students from around the globe, who are an integral part of our research and who gain from our internal programme of researcher development. Their development programme includes monthly journal clubs and researchers meetings, skills development workshops, evidence update sessions, an annual PhD symposium, and our Open Seminar series with national and international speakers. There is also a departmental PhD peer-support group to provide mutual support, exchange experiences, and foster rapid learning. Our postgraduate research students benefit from the extensive range of training and support provided throughout King’s College London Graduate School, which are accessed according to individual training and development needs. Each student develops a bespoke programme in agreement with their supervisors. Doctoral students who choose the Cicely Saunders Institute to undertake PhD research studies are given the opportunity to be at the heart of latest developments in the field. At any one time, there are around 10–15 professionals

Image: PhD students at the Cicely Saunders Institute.

studying for their PhD with us from a wide range of professional backgrounds – currently medicine, nursing, social science, physiotherapy, psychology, and anthropology graduates are represented. In the 2017 Postgraduate Research Experience Survey, independently run via the UK Higher Education Academy, our overall satisfaction score was 100% and every one of our students felt confident of completing their research degree programme within the expected timescale. Our PhDs completed and awarded during 2014–2017 are: DR EMMA MURPHY, 2014. Understanding death on

or after dialysis: a retrospective cohort study of mortality rates and associated factors. Supervised by Prof Fliss Murtagh, Dr Teresa Wiseman, and Prof Irene Higginson DR KEIRA LOWTHER, 2014. A mixed method

evaluation of the effectiveness of a nurseled palliative care intervention for HIV positive patients on antiretroviral therapy (ART) in Mombasa, Kenya. Supervised by Prof Richard Harding, Dr Lucy Selman, and Prof Irene Higginson

56 / Cicely Saunders Institute

DR TOM OSBORNE, 2016. The development and

validation of a questionnaire for use in the clinical setting to aid the assessment of quality of life in people with multiple myeloma. Supervised by Prof Irene Higginson, Dr Sue Hall, and Prof Richard Siegert DR SABRINA BAJWAH, 2016. Adapting and

evaluating a Hospital2Home case conference service for patients with severe progressive idiopathic fibrotic lung disease. Supervised by Prof Irene Higginson, Dr Jonathan Koffman, Prof Julia Riley, and Dr Athol Wells DR CHRISTINA RAMSENTHALER, 2017. Quality

of life in multiple myeloma: Longitudinal trajectories and monitoring symptoms and quality of life to improve quality of care. Supervised by Prof Irene Higginson, Prof Richard Siegert, and Dr Gao Wei

MSc, Postgraduate Diploma and Postgraduate Certificate in Palliative Care Our Master of Science (MSc) in Palliative Care is one of the most highly acclaimed programmes in palliative care in the world. The under-pinning philosophy of the MSc and the Postgraduate Diploma and Postgraduate Certificate programme is to enable students to develop the essential skills required to appraise research and evidence on palliative care and related issues, in order to inform their clinical practice and develop relevant services and policy. We aim to develop a deeper knowledge and understanding of clinical, social, psychological, spiritual and ethical issues in palliative and end of life care, and their assessment and effective management. In addition to being able to critically appraise evidence of new and existing treatments, our students are taught how to formulate important and feasible research questions relevant to the specialty, and then to design and conduct their own rigorous research studies to address these issues. Students are taught by world-leading experts from King’s College London, St. Christopher’s Hospice and other prestigious centres of excellence in the United Kingdom and elsewhere.

Our international reputation attracts high calibre and highly motivated students from all over the world. The range of countries currently and historically represented in the student body is very diverse including those from South Korea, Taiwan, Uganda, South Africa, Brazil, Portugal, Germany, the United States of America, Italy, Spain, the Netherlands, Norway, Israel and many others. This student mix brings with it unique opportunities for students to share experiences on how palliative and end of life care has developed across the world and also to reflect on the social and cultural approaches to death, dying, caring and bereavement. The MSc has also been designed to closely complement the requirements of UK specialists training registrars in palliative medicine. Many students attending the course are attracted to modules that directly fulfil their training needs as consultants in palliative medicine in the making. We frequently refer to the training curriculum to ensure we continue to develop and modify the course to ensure it matches the needs of the specialty. Individuals can also attend stand alone modules. In the 2017 Postgraduate Taught Experience Survey, independently run via the UK Higher Education Academy, our overall satisfaction score was 97%. Student feedback commended our “excellent organisation”, “passionate and expert teachers”, and the opportunity to study with others to understand experiences of palliative care from around the world. Since its inception in 1998, over 500 students have successfully graduated from the course. They have had a direct effect on the assessment and effective management of distressing symptoms associated with advanced disease, have cared for family members during this process and in bereavement, and have influenced local, national and international policy on the provision of palliative and end of life care. Many former students have gone on to achieve significant promotion within their respective professions and countries. Of these students a large number attribute their progression directly to the course experience. We are proud to list Professors of Palliative Care amongst our alumni, for example Prof Claudia Bausewein from Munich and Prof Gerhild Becker from Freiburg. Our students also have a strong track record of sharing

Education and Capacity Building / 57

the findings from their research study projects, and course assignments, in peer-reviewed scientific journals that include Lancet Infectious Diseases, British Medical Journal, Journal of Pain and Symptom Management, Palliative Medicine, Journal of Palliative Care, BMC Public Health and Social Science and Medicine to name a few. Contributions to textbooks include the Oxford Textbook of Palliative Medicine and the Textbook of Palliative Medicine. For a list of all our Masters dissertations, see Publications.

E-learning to disseminate research guidance into practice Our course on developing and evaluating complex interventions aims to improve practice and current standards when researching complex interventions in palliative care. The course consists of six modules framed around the MORECare statement (DOI:10.1186/1741-7015-11-111), including selection of outcome measures, missing data, response shift, and mixed methods. It is relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors. Learning is self-paced and the course is accredited by the UK Royal College of Physicians. We have commenced development of a new e-learning platform, E-Breathe, dedicated to disseminating

Image: MSc graduation 2017.

innovations in breathlessness management to support clinicians, allied health professionals and managers. The Institute’s YouTube Channel (www.youtube. com/user/CSIKCL) hosts about 100 videos. Use of this platform is inexpensive and effective, with our channel attracting over 25,000 views since its creation in 2012. Anyone from any part of the world can easily access videos of lectures, seminars and talks delivered by clinicians, researchers, service users and politicians on the subject of palliative care. We also live stream events throughout the year enabling participation from around the world, and increasing the impact of events beyond those present in the room. We aim to develop this with a multi camera streaming solution in the future. Under the Fellowships Consortium, funded by Cicely Saunders International and The Atlantic Philanthropies, we have driven forward a strategy to engage international fellows in cost-effective, peer-to-peer learning, development and support via a peer-led virtual forum and series of webinars.

The European Palliative Care Academy We are one of four European partners forming the European Palliative Care Academy (EUPCA).

58 / Cicely Saunders Institute

Figure 30: European Palliative Care Academy (EUPCA) network 2013–2017

Academic institution Participants’ place of residence Observation week institution Image: EUPCA 2015–2017 cohort at the Cicely Saunders Institute.

They developed and implemented an innovative international postgraduate educational programme in palliative care, accredited by the Foundation for International Business Administration Accreditation (FIBAA), to advance European palliative care by equipping emergent leaders from all professional backgrounds with necessary competencies and networks. Two cohorts have completed, with the third cohort commencing this year. To date, 39 individuals have completed the training, representing over 20 countries from across Eastern and Western Europe including Albania, Bulgaria, Ukraine, Romania, Poland, Germany, Spain, Ireland, England and France, and disciplines including nursing, medicine, social work, and psychology. The course encompasses five weeks with one week of attendance at each of the four academic centres and an observation week. Each institution offers one module with the modules arranged to enable delivery of individual projects either as a research project or service improvement.

Clinical education King’s College London School of Medicine at Guy’s, St Thomas’ and King’s Hospitals is the largest provider of undergraduate healthcare training in Europe, with over 450 medical students in each year. Palliative care is taught throughout the undergraduate curriculum through seminars, student selected components, bedside clinical teaching, hospice visits, student projects and Objective Structured Clinical

Examinations (OSCEs). Most of our consultants, clinical academics and registrars examine and lecture on the undergraduate programme, and some are also personal tutors. Teaching includes symposia, case-based and clinical bedside teaching, the use of video material, clinical vignettes and role play, and hospice visits where students meet patients as part of our ‘goldfish bowl’ teaching exercise. We offer a range of student-selected components with optional tutorials, an extended essay, and hospice visits, as part of a General Practice attachment. Elective placements are regularly undertaken by overseas medical, nursing and allied health students. Programmes of study are individually tailored with time shared across the clinical and academic departments as well as partner hospices. We also support elective exchanges with Toronto University to give student exposure to palliative care and psychosocial oncology. We are the lead provider in postgraduate palliative medicine training for north-west London, south London, and Kent, Surrey and Sussex. Dr Khan is the Training Programme Director for Palliative Medicine for King’s Health Partners. Dr Edmonds is Quality Assurance lead for the Palliative Medicine faculty, chairs the regional Specialty Training Committee, and is a member of the Royal College of Physician’s Standard Setting Group and Specialty Advisory committee for Palliative Medicine. Professor Higginson is on the exam board for the Royal College of Physicians examination in Palliative Medicine.

Education and Capacity Building / 59

King’s Health Partners and the Regional Hyper-acute Rehabilitation Unit host specialty registrars, academic clinical lecturers and senior lecturers. The palliative care teams provide input into the Nurse Induction programmes, teaching in palliative care to surgical and disease specific wards, and develop end of life care champions across King’s Health Partners. Our Practice Development Nurse further supports the development of palliative and end of life care across all clinical areas for all grades of staff. We also deliver a regular series of educational activities for staff in the acute and community setting, in particular events for General Practitioners (GPs) including quarterly practice meetings, evening tutorials, and a national ‘Hot topics for GPs’ course. We reach other groups with specialist lectures and events, for example speech and language therapists, and community dentists. Through the Regional Hyper-acute Rehabilitation Unit, London North West Healthcare NHS Trust we provide Postgraduate education to health professionals nationally in rehabilitation approaches, techniques and outcome measurement. Regional support is provided through several networks, particularly the British Society of Rehabilitation Medicine regional group, for whom we host and facilitate research meetings. Input is also provided to regional allied health professional groups on research and implementation into practice.

Seminars and workshops

2014 •• ‘EAPC white paper on palliative care in dementia’ by Dr Jenny Van Der Steen, VU University Medical Center, Amsterdam •• ‘Using outcome measurement in health research’ by Professor Mogens Groenvold, Bispebjerg Hospital, Amsterdam •• ‘Bridging clinical practice problems, mechanism-based interventions and contextrelevant outcomes’. Presented in association with King’s College London Palliative Care Society by Professor Richard Harding, Cicely Saunders Institute, and Professor Julia Downing, Vice Chair of Scientific Committee of the International Children’s Palliative Care Network

The Cicely Saunders Institute Seminars, Workshops, and Annual Lectures Over 2,300 people attended our events between 2014–2017, from health and social care professionals to the wider public. We facilitate and optimise opportunities for local, national and international networking within palliative care and rehabilitation to improve practice, education and policy. This is exemplified in our Knowledge Exchange Seminars, supported by the South London NIHR CLARHC. Speakers are invited as individuals leading in their respective fields, undertaking cutting edge research with importance for clinical practice and/or methodological advancement. Where possible, we record events and post edited content on our YouTube channel: www.youtube.com/ user/CSIKCL.

Image: Dr Lesley Henson teaching at the POS Workshop 2016.

•• ‘Development of effective multidimensional interventions for patients with

60 / Cicely Saunders Institute

cancer cachexia’ by Dr Florian Strasser, St Gallen, Switzerland •• ‘Person-centered oncology care and choices’ by Dr Andrew Epstein, Memorial SloanKettering Cancer Center, New York •• ‘Prolonged disorders of consciousness national guidelines’ by Professor Lynne Turner-Stokes, Cicely Saunders Institute and Director of Regional Rehabilitation, Northwick Park Hospital •• Conference: ‘Spiritual care in palliative care: recent European research and future developments’ with speakers The Rev. Dr Mark Cobb, Sheffield Teaching Hospitals; Dr Enric Benito, Balearic Strategy of Palliative Care; Professor Carlo Leget, University of Humanistic Studies, NL; Dr Jonathan Koffman, Cicley Saunders Institute; Dr Mieke Vermander, KU Leuven; Dr Lucy Selman, Cicely Saunders Institute; and Dr Marie-José Gijsberts, Vrije Universiteit Amsterdam

2015 •• ‘Is the experience and expression of living with severe multiple sclerosis ethnically and culturally patterned?’ by Dr Jonathan Koffman, Cicely Saunders Institute, King’s College London •• ‘Dame Cicely Saunders and the hospice vision – is the hospice fit for the 21st century?’ by Dame Barbara Monroe, former Chief Executive, St Christopher’s Hospice •• ‘Implementation Science’ by Professor Jo Rycroft-Malone, Pro-Vice Chancellor Research & Impact, Director, National Institute for Health Research’s Health Services & Delivery Research Programme, Bangor University •• ‘Managing uncertainty for people with dementia in care homes’ by Professor Claire Goodman, Deputy Director, East of England Collaboration for Leadership in Applied Health Research & Care (CLAHRC)

•• ‘Better informing decision-making with multiple outcomes cost-effectiveness analysis in palliative care’ by Dr Nikki McCaffrey, Repatriation General Hospital, Daw Park, Australia •• ‘Diagnoses, problems and healthcare interventions amongst frail older people admitted to hospital as an emergency’ by Professor Rowan Harwood, Consultant Geriatrician & Honorary Professor, University of Nottingham •• ‘Costs of care at the end of life’ by Dr Martin Bardsley, Senior Fellow in Research and Theo Georghiou, Senior Research Analyst, Nuffield Trust •• ‘A palliative care approach for people with advanced heart failure: recognition of need, transitions in care and effect on patients, family carers and clinicians’ by Dr Amy Gadoud, NIHR Clinical Lecturer in Palliative Medicine, Hull York Medical School •• ‘Advance care planning for people with chronic kidney disease’ by Dr Josephine Clayton, Associate Professor of Palliative Care Medicine, University of Sydney •• ‘Non-pharmacological interventions for refractory cough’ by Professor Surinder Birring, Consultant Respiratory Physician and Clinical Professor, Honorary Senior Lecturer, Department of Respiratory Medicine, King’s College Hospital •• ‘Vocational rehabilitation; supporting a return to work – lessons from stroke’ by Dr Kate Radford, Associate Professor in Rehabilitation Research, University of Nottingham •• ‘I want to feel at home when I pass’: how can we better cater end-of-life care to patients in a medical setting?’ by Dr Fiona Kelly, Associate Director (Research), Bournemouth University Dementia Institute •• ‘International Breathlessness Conference: Developing treatments for Breathlessness’ (Copenhagen EAPC) with speakers: Professor Claudia Bausewein,

Education and Capacity Building / 61

Interdisciplinary Center for Palliative •• ‘“Then she won’t miss me when I’m Medicine, Ludwig-Maximillians-University; gone”: Using an interactionist perspective Professor Miriam Johnson, Hull York Medical to understand the experiences and behaviour School, University of Hull; Professor David of children with life limiting conditions and Currow, Flinders University; Professor Irene life threatening illnesses and their families’ J Higginson and Dr Matthew Maddocks, by Professor Myra Bluebond-Langner, Cicely Saunders Institute; Dr Steffen Simon, True Colours Chair in Palliative Care for University Hospital Cologne; Dr Morag Children and Young People, University Farquhar, University of Cambridge College London •• Conference: ‘Measuring the difference we make: Outcome measures and quality indicators in palliative care’ with speakers: Professor Deborah Dudgeon, Kingston General Hospital and Queen’s University, CA; Professor Luc Deliens, Vrije Universiteit Brussel & Ghent University, BE; Professor Claudia Bausewein, Department of Palliative Medicine, University of Munich Hospital, DE; and Dr Richard Harding, Dr Fliss Murtagh, Dr Barb Daveson, Cicely Saunders Institute •• ‘A celebration of the MSc in Palliative Care’ with speakers including: Professor Irene Higginson, Dr Jonathan Koffman, Dr Fliss Murtagh, Dr Sabrina Bajwah, Dr Barbara Gomes; Dr Shaheen Khan, Cicely Saunders Institute; Dr Julian O’Kelly, Royal Hospital for Neuro-disability; Professor Claudia Bausewein, Interdisciplinary Centre for Palliative Medicine, Munich

2016 •• ‘Modelling the costs of caring for people with cancer at the end of life’ by Dr Jeff Round, Lecturer in Health Economics, Bristol University •• ‘Assessment and management of pain in dementia’ by Dr Liz Sampson, Marie Curie Palliative Care Research Department, University College London •• ‘A mixed-methods research process to develop a complex intervention for weight loss and anorexia in advanced cancer: the Family Approach to Weight and Eating (FAWE)’ by Professor Jane Hopkinson, Professor of Nursing, Cardiff University

•• ‘The personal impact of English end-of-life care policy’ by Dr Erica Borgstrom, London School of Hygiene and Tropical Medicine •• ‘Registry-based research and randomized controlled trials (R-RCTs) in Sweden’ by Dr Magnus Ekström, Associate Professor in Respiratory Medicine and Allergology, Lund University/Flinders University •• ‘What’s the story? Patient and family carer experiences of living with a life limiting diagnosis’ by Professor Marilyn Kendall, Senior Research Fellow with the Primary Palliative Care Research Group, University of Edinburgh •• ‘Work is an important – but neglected – issue in palliative care’ by Dr Gail Eva, Senior Lecturer in Occupational Therapy, Brunel University •• ‘Assessment and management of pain in dementia’ by Dr Jane Hutton, Consultant Clinical Psychologist in Psychological Medicine, King’s College Hospital •• ‘Enhancing palliative and end-of-life care for LGBT people’ by Professor Richard Harding, Cicely Saunders Institute •• ‘The Access to Opioid Medication in Europe (ATOME) project: benefits and challenges in working in an international context’ by Professor Sheila Payne, International Observatory on End of Life Care, Lancaster University •• ‘Migrant mortality 1979–2013 & implications for the next generation: beating the odds?’ by Professor Seeromanie Harding, Professor of Social Epidemiology & Nutrition, King’s College London

62 / Cicely Saunders Institute

•• Conference: ‘Quality of life in multiple myeloma: Recent international research and future developments’ with speakers Dr Debra Howell, University of York; Sarah Richard, Myeloma UK; Professor Steve Schey, Clinical Lead for Myeloma, King’s College Hospital and Professor of Plasma Cell Dyscrasias London University; Professor Rob George and Dr Thomas Osborne, St Christopher’s Hospice; Professor Irene J Higginson, Dr Christina Ramsenthaler & Susanne de Wolf-Linder, Cicely Saunders Institute; as well as John Culley, a Myeloma Patient and Service User •• Conference: ‘Palliative care in Neurology’ with speakers Dr Rachel Burman, King’s College Hospital; Dr David Oliver; Professor Raymond Voltz; Professor Carolyn Young, Professor Ray Chaudhuri as well as a soap box session on the future priorities for research among people severely affected by neurological conditions, incorporating perspectives from the CEOs of Parkinson’s UK and the MND Association and the Director of Policy and Research of the MS Society.

2017 •• ‘The challenges and opportunities for an ageing population living with frailty’ by Professor Martin Vernon, National Clinical Director for Older People and Integrated Care at NHS England, Central Manchester University Hospitals NHS Foundation Trust •• ‘A new biography of Cicely Saunders: goals, challenges and methods’ by Professor David Clark, Sociologist at the University of Glasgow, School of Interdisciplinary Studies and lead of the Glasgow End of Life Studies Group •• ‘Unexpected results – rehabilitation trials demonstrating no benefit’ by Professor Catherine Sackley, Professor in Rehabilitation, King’s College London •• ‘Capturing the views of patients and carers about their experiences of care co-ordination’

by Jenny King, Associate Director of Research, Picker Institute Europe •• ‘Understanding symptoms as a threat to function’ by Dr Matthew Maddocks, Lecturer & Specialist Physiotherapist, Cicely Saunders Institute •• ‘Outcomes following treatment limitation discussions in newborn infants’ by Professor Dominic Wilkinson, Professor of Medical Ethics & Director of Medical Ethics, Oxford Uehiro Centre for Practical Ethics •• ‘The effects on costs of palliative care teams in hospitals’ by Professor Charles Normand, Edward Kennedy Professor of Health Policy and Management at Trinity College Dublin and Visiting Professor of Health Economics, London School of Hygiene and Tropical Medicine The Cicely Saunders International Annual Lecture

This is a highlight in our calendar presented by an international leader in the field. We welcome over 100 guests at the Institute including representatives from the media, policy makers, patients and carers, plus live outside videolinks to partner sites across the UK, Europe, the USA and Uganda (to the African Palliative Care Association). Professor Stein Kaasa, Institute of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim (NTNU) delivered the 2014 Annual Lecture on ‘Integration of palliative care into public health and cancer care: a vision for the future’. The 2015 Annual Lecture was delivered by Professor Eduardo Bruera, Professor and FT McGraw Chair in the Treatment of Cancer and Chair of the Department of Palliative Care and Rehabilitation Medicine, The University of Texas MD Anderson Cancer Centre, USA; and Past President, International Association of Hospice and Palliative Care. The lecture ‘Clinical interventions to enhance the expectation of healing: continuing on the

Education and Capacity Building / 63

Image: Professor Eduardo Bruera and guests at the Cicely Saunders 2015 Annual Lecture. From left to right: Lord Bob Kerslake, Chair of King’s College Hospital NHS Foundation Trust; Professor Higginson; Mr John McGrath, Cicely Saunders International Chair Trustee; Dr Eduardo Bruera, lecture speaker; Professor Edward Byrne, President & Principal of King’s College London; and Dr Mary Baines, former colleague of Dame Cicely.

pathway of Dame Cicely’ reviewed how the delivery of palliative care can be more effective by making changes in the physical environment, measuring symptoms, and adapting the approach, communication style, examination, and delivery of healthcare professionals. In 2016 Professor Ilora Finlay delivered the Cicely Saunders International Annual Lecture: ‘Unintended consequences of legislation at the end of life’. In her lecture, Baroness Finlay reviewed evidence on the effects of various types of ‘assisted dying’ legislation from around the world, as well as the consequences of The Health and Social Care Act (2012) on hospice and palliative care in England. The lecture highlighted how laws influence the provision of healthcare services, and received coverage in The Daily Telegraph with an article about the need for better end of life care in the UK. Our 2017 speaker, Professor David Kissane MD, Head of Psychiatry for Monash University, Australia and Chairman of the Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, presented on ’Integrating the Existential and Psychosocial into Palliative Medicine: Hope, Value and Meaning counter Demoralization to Sustain Patients, Families and Care Teams’.

Image: Baroness Ilora Finlay of Llandaff delivers our 2016 Annual Lecture.

Image: 2017 Annual Lecture guest speaker, Professor David Kissane.

Clinical Services

Clinical Services / 65

Clinical palliative care and rehabilitation services are an integral component of the Institute, delivered across King’s Health Partners (KHP) in King’s College Hospital (Denmark Hill and Princess Royal hospitals), Guy’s and St Thomas’ hospitals, in the communities of Lambeth, Southwark and Lewisham, and at the Regional Hyper-acute Rehabilitation Unit (RHRU) at Northwick Park Hospital. Clinical and academic colleagues learn from each other and work together to develop evidence-based research focused on improving care for patients and carers. Several clinical consultants have honorary academic appointments and vice versa. These, and a growing number of joint clinical-academic posts, including: chairs, clinical lecturers, research fellows and research nurses, have helped to further integrate our research and clinical activities. A programme of joint journal clubs, clinical academic division and forum meetings and evidence updates/team meetings facilitate the regular exchange of information and ideas. Bi-annual Knowledge Exchange Seminars are held for all team members and our academic and clinical partners across the local community, promoting discussion and dissemination of clinical and academic initiatives. In addition to providing clinical services, the clinical teams are involved in service development and innovation, translational research, and leading the provision of relevant

Image: The KCH Denmark Hill clinical team is housed in the Cicely Saunders Institute building.

Image: KCH PRUH Team.

undergraduate and postgraduate education and training (see Education and Capacity Building). Alongside the core clinical services, all team members continually aim to support and educate all healthcare professionals involved in the care of patients and families with palliative care and/ or rehabilitation needs. Teams routinely host visiting healthcare professionals from other local, national and international teams along with multiprofessional undergraduate students.

Palliative care services Across the King’s College Hospital NHS Foundation Trust, including Denmark Hill (KCH DH) and Princess Royal (KCH PRUH) sites, as well as the Guy’s and St Thomas’ NHS Foundation Trust (GSTFT), our clinical teams receive over 4,000 referrals each year, with approximately 85% accepted into care. Referrals are received from almost any speciality, with noncancer primary diagnoses accounting for 60% at KCH DH, 50% at KCH PRUH and 30% at GSTFT, of all referrals. Palliative care services for inpatients across all sites are provided by multi-professional teams. A 24/7 telephone advice service for health professionals is provided across all three sites, as well as with colleagues at Lewisham hospital, supporting 7 day a week visiting (excluding KCH PRUH). Patients are seen in an advisory capacity and remain under the admitting team. Plans are in place to expand the team at the Princess Royal Hospital to facilitate 7 day a week face to face visiting by specialists in palliative care.

66 / Cicely Saunders Institute

Image: Inpatient and community team at GSTFT.

The Guy’s and St Thomas’ Community Palliative Care team provides 24/7 support for patients, their carers and healthcare professionals in the community across Lambeth, Southwark and Lewisham. The team hold quarterly meetings at General Practice surgeries to discuss palliative and end of life care issues with primary care colleagues and work closely with nursing colleagues in the vertically-integrated community nursing service. The team has close working relationships with colleagues in additional organisations including care homes, hostels and local hospices including Royal Trinity Hospice, St Christopher’s Hospice and the Greenwich and Bexley Hospice.

provides a welcoming and relaxing environment for patients, carers or family and friends of people with cancer or other long term conditions. It is run by a full time Centre Manager and a team of trained volunteers. Visitors attend with queries, to access support activities such as outreach visits and benefit services, to attend self-help

Bereavement follow-up is provided to friends and relatives of all patients known to the service, and all are invited to the annual Palliative Care Memorial Services held in Southwark Cathedral and in the chapel at King’s College Hospital. This includes invitations to healthcare professionals involved in the care of our patients. The Macmillan Information and Support Centre is housed on the ground floor of the Institute and

Image: Macmillan Information and Support Centre.

Clinical Services / 67

and support groups, or to make use of the quiet space it offers. The centre holds a Macmillan Quality Environment Mark award, recognising that the environment is welcoming and accessible to all, respectful of privacy and dignity, supportive to users’ comfort and well-being, and listens to the voice of users. The centre offers information and support, both locally and nationally, and encourages patients to self-manage through contacting support groups and obtaining robust, reliable advice online. Self help patient and family support groups are hosted in the Institute, making use of the flexible Dinwoodie multifunction room, near the Information and Support Centre on the ground floor.

via the GSTFT palliative care team being selected to participate in the national “Building on the Best” vanguard programme. We have also led the development of executive-led Trust-wide end of life care governance committees at KCH and GSTFT to oversee care delivery and patient and family experience within the hospitals and the community.

Service innovation – Palliative care

Development of 7 day a week visiting across all areas of KHP: Following an agreement with the Bromley CCG to fund palliative care services at the Princess Royal site, and the subsequent approval of a business case within King’s, the expansion of the palliative care team at the Princess Royal hospital is now underway. This will facilitate the development of 7 day a week visiting at this site, bringing it in line with other KHP sites.

Patient outcomes: Both acute Trusts participated in data collection for the national pilot on specialist palliative care funding. Our clinical teams have integrated the recording of outcome measures (phase of illness, performance status and POS) into routine clinical practice to support the delivery of quality clinical care. In 2016 the KCH Palliative Care team were nominated finalists to receive a BMJ award for their work in this field.

Specialist palliative care pharmacy: Steven Wanklyn has established his role as Consultant Pharmacist for palliative and end of life care, leading on clinical, educational, patient safety and service development innovations within the field of pharmaceutical sciences. This includes a focus on rapid hospital discharge, and developing systems to enable safe and timely access to injectable medications on discharge.

End of life care: Across KHP we have introduced notification systems that identify dying patients and trigger support for ward staff with overarching principles of care. We offer education and support with individualised care planning, communication and documentation as well as senior out of hours support. At KCH a pilot project has been developed and implemented for trained volunteers to deliver hand massages to patients; with early evaluation demonstrating positive benefits for patients. Support for family and carers is also key and work has been completed across all hospital sites to support families on a practical level including the provision of comfort packs and fold out beds. Clinical teams at KCH DH, KCH PRUH and GSTFT host annual “Dying Matters” events to encourage dialogue, raise awareness and increase public engagement in relation to end of life care. These events are supported by both internal and external stakeholders in the community. These approaches are being evaluated and fed back nationally, for example

London Opioid Safety and Improvement Group – LOSIG: We have established the London Opioid Safety and Improvement Group (LOSIG) working to facilitate the safe and effective medicinal use of opioids in all healthcare settings. LOSIG is responsible for the development and dissemination of best practice guidance and acts an expert reference group for consultation. Our work plan responds to national and local priorities through the development of policies, procedures and guidance aimed at improving opioid safety. LOSIG is an interdisciplinary group with representation from specialist palliative care, pain management, perioperative and intensive care, community and independent sectors, prison services, and adult and children’s hospices. Cross discipline integration: We have established close working relationships with specialties across our clinical teams. Examples of established working practices and outputs from integration include:

68 / Cicely Saunders Institute

•• Renal medicine: we work with our renal teams across all sites to identify patients with palliative care needs early on, so more tailored information about patient choices and better symptom management can be delivered. •• Critical Care: A joint project at KCH DH led to the development and implementation of a routine psychosocial assessment and communication evaluation tool, PACE. This aims to support patients and families at times of uncertainty. Intensive care referrals and activity has since increased and a second palliative care social worker has been appointed to support this increase in activity. With the expansion of critical care at KCH DH, the palliative care team have adapted their model of care to include in-reach support from our social work team. This includes increased patient and family support along with the development of more robust bereavement care and staff support. Our OPTCare Neuro trial is testing early integrated palliative care (see Evaluating and Improving Care).

Dr Caroline Jolley (Respiratory Medicine) and Dr Charles Reilly (Physiotherapy) developed and evaluated the breathlessness triggered support service. Dr Sabrina Bajwah has established an innovative joint Interstitial Lung Disease/Palliative Care clinic within KHP. •• Oncology: We have established Consultantled Palliative Care clinics 5 days a week at the Guy’s Cancer Centre, as part of GSTFT, to support the management of this group of patients from diagnosis onwards. •• Skin services: Professor Rob George and Dr Teresa Beynon input into services with joint ward rounds, multidisciplinary team meetings, and provide consultation on inpatients and outpatients nationally.

•• Neurology: Dr Rachel Burman is an integral part of the motor neurone disease service at KCH DH providing a weekly joint clinic with the neurology team. Palliative care principles are embedded within the patient pathway.

•• Institute of Liver Studies: We continue to strive to develop an integrated approach to the management of patients with end stage liver disease. KCH DH are involved in weekly joint morbidity and mortality meetings and the development of models of care to support patients with advanced disease. Guidelines for the management of symptoms in advanced liver disease have been collaboratively written by hepatology, pharmacy and palliative care specialists. These are now is use across KHP, London and have been shared nationally.

•• Respiratory medicine: Professor Higginson, working with Professor John Moxham and

Researching ways to improve the skills of staff through training and education: We have

Image: The Palliative Care Team at King’s College Hospital NHS Foundation Trust, Denmark Hill.

Clinical Services / 69

a complementary suite of projects underway to support this. The ‘Transforming End of Life Care Project’ – a 2 day multidisciplinary training course, aims to improve the quality of patient and family care in advanced disease provided by front line staff. The course is delivered by GSTFT Palliative Care Teams. Evaluation involves both the course facilitators and participants in an effort to continually refine and improve the education. Communication with patients and their families, and between healthcare professionals is often challenging, and is a common source of complaints. In response a clinician-led social enterprise, called ‘Difficult Conversations’, has developed workshops across London to equip health and social care professionals during potentially difficult conversations with people with life-threatening illness, and their families. With partners we are evaluating the ‘Difficult Conversations’ workshops.

Rehabilitation services The Regional Hyper-acute Rehabilitation Unit (RHRU) at Northwick Park Hospital is one of the provider units offering specialised neurorehabilitation following trauma and complex neurological illness/injury across London. The RHRU is directed by Professor Lynne Turner-Stokes and is an affiliated unit of the Institute within King’s College London. It provides inpatient and outreach neurorehabilitation for a catchment population of over 15 million people, spanning London and the Home Counties. The rehabilitation team provides coordinated inter-disciplinary rehabilitation. It supports district specialist rehabilitation services and community-based teams, as well as linking with specialist nursing homes who provide lifelong residential care for patients with long term conditions resulting in complex neurological disability as well as progression to home in some cases.

Service innovation – Rehabilitation Specialist Community Outreach Team: The RHRU provides a Specialist Community

Outreach Team service providing specialist assessment, management advice and support to teams, patients and carers. The service provides advice, support and spasticity intervention for management of people with complex neurodisability and support to their carers. The team works with nearby community rehabilitation teams and the inpatient service at Northwick Park Hospital. Complex Physical Disability Management: The Specialist Community Outreach Team have developed close working relationships with rehabilitation units and community rehabilitation services across the region. The team provides advice to these services through the patient pathway, from acute management post injury to long term disability management and palliative care. The team has developed systems to review and re-evaluate patients with prolonged disorders of consciousness. The team has been involved in the development of the guideline on this subject produced by the Royal College of Physicians. Spasticity Management: Spasticity management is currently provided through the Specialist Community Outreach Service by Dr Stephen Ashford, clinical lecturer and consultant physiotherapist. This involves administration of botulinum toxin to both patients in our own regional unit and in other rehabilitation units, hospitals, nursing homes and at home. Advice on systemic spasticity medication and onward referral to other services for regional intervention (either intrathecal baclofen pumps or intrathecal phenol) is also provided. We were one of the first services to provide administration of botulinum toxin by a Physiotherapist through use of a Patient Group Direction. Dr Ashford now uses independent prescribing to enable the provision of botulinum toxin and systemic anti-spasticity medications to patients across the region in the community as well as acute hospital settings. We have developed systems to help patients, carers and clinicians identify what targets for treatment are important and set treatment goals in real-life settings. We have undertaken the development of clinical tools and questionnaires to record the goals set for intervention, therapy (physical therapy and exercise) and medical inputs that people receive for the management

70 / Cicely Saunders Institute

Image: The team at the Regional Hyper-acute Rehabilitation Unit, Northwick Park Hospital.

of muscle spasticity in the arm or leg. Lastly, we have focused on the development and testing of patient reported outcome measures to evaluate improvement in the leg to complement the work in arm spasticity. Evidence from our work has been incorporated into the national Royal College of Physicians guidelines on management of spasticity. Use of botulinum toxin in the management of spasticity: The RHRU have developed an integrated care pathway for focal spasticity treatment using botulinum toxin and have been able to use data from this to inform the future development of more holistic spasticity management. The pathway provides a systematic method of recording the process and outcome of intervention. Key elements include systematic recording of intervention and outcome, implementation of Goal Attainment Scaling and outputs including national guidelines for management of spasticity. This systematic data collection system has now been incorporated into the Upper Limb International Spasticity (ULIS) research programme (see SymptomLed Research). Shoulder pain: Within the RHRU a clinic for hemiplegic shoulder pain has been established which has developed a model of pain management for patients post stroke and with acquired brain injury. This clinical work has been evaluated through research projects looking at systems for evaluating and recording patient reported pain for those

with communication difficulties. This work has utilised a Patient Reported Outcome measure, the SPIN, which was developed with the team at the Cicely Saunders Institute, King’s College London. Integrated Care Pathway for management of hemiplegic shoulder pain: Shoulder pain is a common and distressing problem for many patients with neurological conditions such as stroke. To improve management of this problem, we introduced a proforma and associated evidence based guidelines which prompt timely assessment of hemiplegic shoulder pain, guide the choice of intervention and enable the course of management to be followed. Three rounds of audit have been carried out to assess performance on 18 quality standards. We have found that introducing the proforma has improved standards of documentation and demonstrated a positive outcome in over half of our patients. A key output of this work is an information pack designed for rehabilitation professionals, which is available on request from the RHRU. Further outputs include publications in peer-reviewed journals and presentations to rehabilitation professionals, both locally and at national and international conferences. Depression: An integrated care pathway has been developed for the management of depression in patients with acquired brain injury. This has been implemented in practice and has been tested within our service, leading to consistent structured management of patients in our care.

Contribution to the Disciplines / 71

Contribution to the Disciplines External Committees Academic and independent researchers Professor Irene J Higginson

Congress of the European Association for Palliative Care. Copenhagen, Denmark. May 2015

Awards

•• Vittorio Ventafridda lecture World Research Congress of the European Association for Palliative Care, Bern 2018 •• Hinohara Lecture, 29 July 2017, 12th Asia Pacific Hospice Conference, Singapore •• Royal College Balfour Mount Visiting Professorship in Palliative Medicine, Ottawa, Canada. February 2017–18 •• Clinical Excellence, Platinum Award, December 2015 •• National Institutes for Health Research Senior Investigator Emeritus, April 2016 Chair/Senior official roles

•• Director of Research and Innovation, King’s College Hospital NHS Foundation Trust •• Chair, Research Leads Committee, King’s College Hospital NHS Foundation Trust •• Chair, Scientific Committee, 14th World

Membership

•• Fellow of the Academy of Medical Sciences •• Fellow of the Royal College of Physicians •• Fellow of the Faculty of Public Health •• Fellow of the Royal Society of Medicine (including: Palliative Medicine and Gerontology sections) •• Association for Palliative Medicine (Treasurer 2010–2014) •• 1942 Club of Clinical Professors •• British Medical Association •• NIHR HTA End of Life Care and Add-on Studies Board Member, and NIHR HTA Efficient Study Designs Board Member (2015–2016) •• RCP Specialty Certificate Examination Board Professor Richard Harding Membership

•• Board Member, BHIVA (British HIV Association) Standards Steering Committee (2016–)

•• Board Member, WHPCA – Worldwide Hospice Palliative Care Alliance (2016–) •• Board Member, LGBT Advisory Group – Palliative and End of Life Care (2015–) •• Board Member, WHO Technical Working Group on Palliative Care (2015–) •• Board Member, Advisory Council of the African Palliative Care Research Network (APCRN) (2012–) •• Board Member, Steering Committee: EAPC Task Force on Palliative Care in Africa: Fostering collaboration and partnership (2011–2016) •• Board Member, Bright Sparks UK (2008–) •• Board Member, Program Council for the International Palliative Care PhD Programme hosted by Norwegian University of Science and Technology (NTNU), Norway •• External advisory board member, EmERGE project (Evaluating mHealth technology in HIV to improve Empowerment and healthcare utilisation: Research and innovation

72 / Cicely Saunders Institute

Image: The staircase at the Cicely Saunders Institute displays work by artist Caroline McCarthy, which directly responds to Dame Cicely’s Legacy – the work represents the idea of a constellation, bringing light and also something of the home into the building.

•• •• •• ••

••

•• ••

•• •• ••

to Generate Evidence for personalised care) (2015–) Board member, International Association Hospice Palliative Care 2012–2014 WHO person-centred care community of practice (2017–) International Palliative Care Consensus Working Group Research Committee of the International Children’s Palliative Care Network (2015–) Ethics Committee of the Hospice Palliative Care Association of South Africa (2011–) Palliative Care Research Association (2000–) Invited member of the European Partnership Against Cancer – European Commission Health Directorate (2013) Invited member of the WHO Group “Decent Care Values in Palliative Care” (2012) African Palliative Care Association International AIDS Society

•• National Hospice Palliative Care Organisation •• International Association of Hospice Palliative Care •• GMFA •• Office of the U.S. Global AIDS Coordinator Palliative Care Indicators Group •• International Palliative Care Family Carer Research Collaboration •• Society for Social Medicine •• Associate member COMPASS Collaborative •• European Public Health Association •• Canada-UK HIV Rehabilitation Research Collaborative (CUHRRC) Professor Lynne Turner-Stokes Chair

•• Healthcare Resource Group Expert Reference Panel for Rehabilitation (2005–) •• Co-Chair, National Clinical Guidelines: Spasticity in Adults Royal College of Physicians (2009–)

•• National Clinical Guidelines: Prolonged Disorders of consciousness Royal College of Physicians (2010–) •• Pricing Strategy Advisory Group for Monitor and NHS England (2014–15) •• Clinical Reference Group for Rehabilitation Specialised Services Commissioning (2012–16) Membership

•• RCP Joint Specialist Committee for Rehabilitation Medicine (2000–) •• Medical Defence Union Council and Cases Committees (2000–) •• President, British Society of Rehabilitation Medicine (2014–16) •• CRG for Rehabilitation & Complex Disability Specialised Services Commissioning (2016–) •• National Lead, National Clinical Audit for Specialist Rehabilitation following Major Injury (NCASRI)

Contribution to the Disciplines / 73

Dr Catherine Evans

Dr Jonathan Koffman

Membership

•• International Collaborations in Community Health Nursing Research (ICCHNR) Dr Wei Gao Membership

•• NIHR End of Life Care and Add on Studies Board (2015–2016) •• External Stakeholder Advisory Group, End of Life Care Intelligence Network (2013–2017) •• The Royal Statistical Society (RSS) (2008–) •• Honorary Member Faculty of Public Health (FPH) (2014–) •• Fellow Member The Higher Education Academy (HEA) (2014–) •• The Society for Social Medicine (SSM) (2015–) •• The Palliative Care Research Society (PCRS) (2012–) •• The Chinese Preventive Medicine Association (CPMA) (1996–)

•• National Cancer Research Institute, Supportive & •• Research Grants Committee Palliative Care Clinical for Marie Curie Studies Group, member, •• Commission into the Future Rehabilitation Subgroup of Hospice Care organised chair (2013–16), by Hospice UK (2012–2014) Advanced Disease and End-of-Life Subgroup chair Dr Matt Maddocks (2016–) Awards

•• British Lung FoundationNAPP travel scholarship (2016) •• CLARHC South London. Best original research paper for ‘neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD’ (2016) •• European Respiratory Society, Prize for best abstract on COPD management (2014) •• American Thoracic Society Scholarship from Assembly on Pulmonary Rehabilitation Program Committee (2014) Chair

•• Council for Allied Health Professions Research, London Hub facilitator (2011–14), Chair (2014–)

Membership

•• Chartered Society of Physiotherapy •• Health Professions Council (Registered Physiotherapist) •• Fellow of the Society on Cachexia and Wasting Disorders •• Fellow of the Higher Education Academy •• British Thoracic Society •• European Respiratory Society •• European Association of Palliative Care •• Association of Chartered Physiotherapists in Oncology & Palliative Care •• 10th Palliative Care Congress Scientific Committee (2015) •• European Association of Palliative Care, Advisory

Image: Professor Irene Higginson giving the Hinohara Lecture at the 12th Asia Pacific Hospice Conference in Singapore, July 2017.

74 / Cicely Saunders Institute

Image: The John McGrath Meeting Room at the Cicely Saunders Institute, named for the Chairman of Cicely Saunders International.

Board for World Congress (2015–2017) Dr Katherine Sleeman Membership

•• Academy of Medical Sciences – Academic Careers committee •• Royal Marsden Partners Pan-London Research Board •• Royal Marsden Partners Palliative Care Group, Academic Representative •• KCL Academic Board (internal committee)

Researchers Dr Stephen Ashford Membership

•• Contributor, Intercollegiate Working Party for Stroke 2015 (specialist area; spasticity management) •• Junior Secretary, Society for Research in Rehabilitation (2015–2017) •• Organising committee and scientific committee – European Federation for Rehabilitation Research 2017 •• Organising committee

and scientific committee – International Neurological Physiotherapy Association conference 2016 •• Upper Limb International Spasticity (III) project steering committee (2013–2021) Dr Sabrina Bajwah

•• Association of Chartered Physiotherapists in Oncology & Palliative Care Anna Bone Membership

•• Executive committee for the Palliative Care Research Society (PCRS)

Membership

Lisa Brighton

•• British Lung Foundation Idiopathic Pulmonary Fibrosis clinical and research committees •• British Thoracic Society Emergency Oxygen Guideline Group •• National Institute of Clinical Excellence Idiopathic Pulmonary Fibrosis Quality Standard

Awards

Jo Bayly

•• Most Innovative Patient and Public Involvement Activity awarded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London (2016) •• Professor Rob Buckman Scholarship awarded by Cicely Saunders International (2016–2018)

Membership

Dr Katherine Bristowe

•• Executive committee communications officer, Palliative Care Research Society •• Moderator, Chartered Society of Physiotherapy Oncology & Palliative Care Online Network •• European Association of Palliative Care

Membership

•• Palliative Care Research Society •• Honorary member of the Australian and New Zealand Society of Nephrology Joanna Davies Membership

•• Society for Social Medicine

Contribution to the Disciplines / 75

Dr Polly Edmonds

Dr Simon Noah Etkind

Chair

Membership

•• RCP Specialty Certificate Examination Standard Setting Group

•• Science Committee Representative, Association for Palliative Medicine (APM) Trainees Committee (2016- ) •• Palliative Academic Clinical Trainees Society (2016)

Membership

•• Royal College of Physicians Specialty Advisory Committee •• London specialist training committee, palliative medicine •• RCP Specialty Certificate Examination Question Writing Group Clare Ellis-Smith

Dr Ping Guo Membership

•• Palliative Care Research Society •• Royal College of Nursing International Scientific Advisory Panel

Membership

Dr Natasha Lovell

•• Health and Care Professions Council •• Royal College of Occupational Therapists •• Royal College of Occupational Therapists Specialist Sections; Older People •• HIV, Oncology and Palliative Care

Chair

•• Palliative Medicine Trainee Committee London

Association for Palliative Medicine Trainees’ Committee •• Royal College of Physicians and Association for Palliative Medicine (APM) Steve Marshall Membership

•• All Party Parliamentary Group on Bereavement Support •• Trekstock’s Health Advisory Board Sophie Pask Membership

•• CLAHRC South London Strategic Oversight Group for Patient and Public Involvement •• Palliative Care Research Society

Membership

•• Trainee representative, London/ KSS Palliative Medicine Specialty Training Committee (STC) •• Regional representative,

Dr Dominique Wakefield Awards

•• NIHR Academic Clinical Fellow (2015)

Image: Birch Tree installation at the Institute by artist Tania Kovats. Symbolising the reality that being at the point of life where the small details of living come into focus, like the surface of tree bark and the sound of birds – something precious enough to be noticed and cherished.

76 / Cicely Saunders Institute

Membership

•• Secretary, Royal Society of Medicine Palliative Care Section (2011–) •• Junior representative,

Royal Society of Medicine Palliative Care Section (2010–2011) •• Royal College of General Practitioners (2011–2015)

•• Adoption and Impact Programme – National Institute for Clinical Excellence (NICE) (2013–)

Professor Lynne Turner-Stokes •• Clinical Rehabilitation – Editorial Board •• Journal of Rehabilitation Medicine – Editorial Board •• Concise Guidance series for the Royal College of Physicians, published in Clinical Medicine – Editor •• Specialist neurorehabilitation services for the British Society of Rehabilitation – Lead Author/Editor •• Core standards for Major Trauma which underpin the NCASRO national clinical audit for the British Society of Rehabilitation – Lead Author/Editor

•• The Open Epidemiology Journal (2011–) •• Asian Pacific Journal of Tropical Diseases – Statistical Editor (2014–) •• Chinese Journal of Pharmaco-epidemiology (2008–2013)

Editorial Roles Professor Irene J Higginson •• Journal of Palliative Medicine (US) – Senior Associate Editor (UK) (1999–) •• BMJ Supportive and Palliative Care – Editorial Advisory Board (2015–) •• Palliative Medicine (UK) – Editorial Advisory Board (1999–) •• Journal of Palliative Care – Editorial Board (1997–) •• Quality of Life and Health Outcomes – Editorial Board (2004–) •• Nursing and Public Health Quarterly (Poland) (2016–) Professor Richard Harding •• AIDS Care – Editorial Committee •• Journal of Pain and Symptom Management – Editorial Board

Dr Gao Wei •• Health and Quality of Life Outcome – Associate Editor (2016–) •• Journal of Palliative Care and Medicine (2011–)

Dr Simon Noah Etkind •• Postgraduate Medical Journal – Associate Editor (2015) Dr Stephen Ashford •• Physiotherapy Research International (Journal) – Assistant Editor •• Botulinum toxin A intervention for spasticity management in the UK (for publication 2017) – Editor (2017)

Peer reviewing for journals by members of Cicely Saunders Institute staff includes: African Journal of Microbiology Research Age and Ageing American Journal of Respiratory and Critical Care Medicine BMC Medicine BMC Palliative Care

BMC Pulmonary medicine

British Journal of Cancer

BMJ

British Journal of Sports Medicine

BMJ Case Reports BMJ Learning BMJ Open BMJ Supportive & Palliative Care

CHEST Chronic Respiratory Disease Clinical Journal of the American Society of Nephrology

Contribution to the Disciplines / 77

Clinical Oncology

Research & Therapy

Clinical Rehabilitation

Journal of Clinical Nursing

Communication & Medicine

Journal of Clinical Oncology

COPD: Journal of Chronic Obstructive Pulmonary Disease

Journal of Neurology

Critical Care Medicine

Journal of Pain and Symptom Management

New England Journal of Medicine Nurse Prescribing Palliative Medicine Parkinsonism & Related Disorders

Journal of Palliative Care

Patient Education and Counseling

Disability and Rehabilitation

Journal of Palliative Care and Medicine

Physical Therapy

European Journal of Cancer Care

Journal of Rehabilitation Medicine

European Journal of Clinical Nutrition

Journal of Wound Care

Critical Reviews in Oncology & Haematology

Lancet

Physical Therapy Reviews Physiotherapy Physiotherapy Research International

European Journal of Epidemiology

Lancet Infectious Diseases

Physiotherapy Theory and Practice

European Journal of Pain

Lancet Neurology

PLOS Medicine

European Respiratory Journal

Lancet Oncology

PLOS ONE

European Respiratory Journal Open

Lancet Respiratory Medicine LBGT Health

Primary Health Care Research and Development

Geriatrics

Medical Care

Psycho Oncology

Health Affairs

Medical Education

Psychological Assessment

Health and Quality of Life Outcomes

Nature Oncology

Respirology

Medicine & Science in Sports & Exercise

Social Science and Medicine

Nephrology Dialysis Transplantation

Cochrane Database of Systematic Reviews

Neurorehabilitation and Neural Repair

The Open Epidemiology Journal

International Journal of Nursing Studies International Journal of Therapy and Rehabilitation Journal of Cachexia, Sarcopenia and Muscle Journal of Cancer

Neurosurgery and Psychiatry

Peer reviewing for research grants and programmes Members of the Institute staff peer review grant proposals for national, regional and international governmental bodies, statutory organisations and charities across six of the

seven continents of the globe, to aid their assessment and support for palliative care and rehabilitation, and to improve research quality.

Supportive Care in Cancer

Thorax

78 / Cicely Saunders Institute

Publications Table A: Top research publications (2014-August 2017) by Journal Citation Report Impact Factor Title

Authors

Year

Journal

2016 Impact Factor

Liverpool Care Pathway for patients with cancer in hospital: a cluster randomised trial

Costantini M, Romoli V, Leo SD, Beccaro M, Bono L, Pilastri P, Miccinesi G, Valenti D, Peruselli C, Bulli F, Franceschini C, Grubich S, Brunelli C, Martini C, Pellegrini F, Higginson IJ

2014

The Lancet

Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers*

Gomes B, Calanzani N, Higginson IJ

2014

JAMA

Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis.

Henson LA, Gao W, Higginson IJ, Smith M, Davies J, Ellis-Smith C, Daveson B

2015

Journal of Clinical Oncology

24.00

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial

Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, McCrone P, Booth S, Jolley CJ, Moxham J

2014

The Lancet Respiratory Medicine

19.29

Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: a randomised double-blind, placebo-controlled trial

Maddocks M, Nolan CM, Man WD, Polkey MI, Hart N, Gao W, Rafferty GF, Moxham J, Higginson IJ

2016

The Lancet Respiratory Medicine

19.29

Pedometer Step Count Targets During Pulmonary Rehabilitation in COPD: A Randomized Controlled Trial

Nolan CM, Maddocks M, Canavan JL, Jones SE, Delogu V, Kaliaraju D, Banya W, Kon SSC, Polkey MI, Man WD

2017

American Journal of Respiratory & Critical Care Medicine

13.20

Functionally Relevant Cut Point for Isometric Quadriceps Muscle Strength in Chronic Respiratory Disease*

Canavan JL, Maddocks M, Nolan CM, Jones SE, Kon SS, Clark AL, Polkey MI, Man WD

2015

American Journal of Respiratory & Critical Care Medicine

13.20

Place and Cause of Death in Centenarians: A Population-Based Observational Study in England, 2001 to 2010

Evans CJ, Yuen Ho, Daveson BA, Hall S, Higginson IJ, Gao W, on behalf of the, Guide Care project

2014

PLoS Medicine

11.86

Skeletal muscle adiposity is associated with physical activity, exercise capacity and fibre shift in COPD

Maddocks M, Shrikrishna D, Vitoriano S, Natanek SA, Tanner RJ, Hart N, Kemp PR, Moxham J, Polkey MI, Hopkinson NS

2014

European Respiratory Journal

10.57

How does a new breathlessness support service affect patients?

Gysels M, Reilly CC, Jolley CJ, Pannell C, Spoorendonk F, Bellas H, Madan P, Moxham J, Higginson IJ, Bausewein C

2015

European Respiratory Journal

10.57

Nurse-led palliative care for HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial

Lowther K, Selman L, Simms V, Gikaara N, Ahmed A, Ali Z, Kariuki H, Sherr L, Higginson IJ, Harding R

2015

The Lancet HIV

9.84

Exercise for cancer cachexia in adults: Executive summary of a Cochrane Collaboration systematic review

Grande AJ, Silva V, Maddocks M

2015

Journal of Cachexia Sarcopenia & Muscle

9.70

47.83

44.4

Publications / 79

Title

Authors

Year

Journal

Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data

Sleeman KE, Perera G, Stewart R, Higginson IJ

2017

Alzheimer’s & Dementia

9.48

Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention

Bajwah S, Ross JR, Wells AU, Mohammed K, Oyebode C, Birring SS, Patel AS, Koffman J, Higginson IJ, Riley J

2015

Thorax

8.27

Sarcopenia in COPD: prevalence,

Jones SE, Maddocks M, Kon SS, Canavan JL, Nolan CM, Clark AL, Polkey MI, Man WD

2015

Thorax

8.27

clinical correlates and response to pulmonary rehabilitation Physical frailty and pulmonary rehabilitation in COPD: a prospective cohort study

Maddocks M, Kon SS, Canavan JL, Jones SE, Nolan CM, Labey A, Polkey MI, Man WD

2016

Thorax

8.27

Implementation of the Needs Assessment Tool for patients with interstitial lung disease (NAT:ILD): facilitators and barriers*

Reigada C, Papadopoulos A, Boland JW, Yorke J, Ross J, Currow DC, Hart S, Bajwah S, Grande G, Wells A, Johnson MJ

2017

Thorax

8.27

Gait speed and pedestrian crossings in COPD* Nolan CM, Kon SSC, Patel S, Jones SE, Barker RE, Polkey MI, Maddocks M, Man WD

2017

Thorax

8.27

One evidence base; three stories: do opioids relieve chronic breathlessness?*

Ekstrom M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ

2017

Thorax

8.27

Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial

Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S

2014

BMC Medicine

8.10

How should we manage information needs, van Vliet LM, Harding R, Bausewein C, family anxiety, depression, and breathlessness Payne S, Higginson IJ; EUROIMPACT for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design

2015

BMC Medicine

8.10

Measures to assess commonly experienced symptoms for people with dementia in longterm care settings: a systematic review

Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, Higginson IJ, Daveson BA; BuildCARE

2016

BMC Medicine

8.10

Which patients with advanced respiratory disease die in hospital?

Higginson IJ, Reilly CC, Bajwah S, Maddocks M, Costantini M, Gao W; GUIDE_ Care project

2017

BMC Medicine

8.10

How many people will need palliative care in 2040? Past trends, future projections and implications for services

Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, Murtagh FEM

2017

BMC Medicine

8.10

* Research letter or synopsis

2016 Impact Factor

80 / Cicely Saunders Institute

Table B: Top five research publications (2014-August 2017), by number of citations, as at September 2017 (Source: Scopus) Title

Authors

Year

Source title

Citations

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: A randomised controlled trial

Higginson, I.J., Bausewein, C., Reilly, C.C., Gao, W., Gysels, M., Dzingina, M., McCrone, P., Booth, S., Jolley, C.J., Moxham, J.

2014

The Lancet Respiratory Medicine

111

Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? a systematic review

Moens, K., Higginson, I.J., Harding, R.

2014

Journal of Pain and Symptom Management

How many people need palliative care? A study developing and comparing methods for populationbased estimates

Murtagh, F.E.M., Bausewein, C., Verne, J., Iris Groeneveld, E., Kaloki, Y.E., Higginson, I.J.

2014

Palliative Medicine

Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial

Farquhar, M.C., Prevost, A.T., McCrone, P., Brafman-Price, B., Bentley, A., Higginson, I.J., Todd, C., Booth, S.

2014

BMC Medicine

Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): A systematic review

Lowther, K., Selman, L., Harding, R., Higginson, I.J.

2014

International Journal of Nursing Studies

Table C: Research publications (2014–2016) in top percentile by field-weighted citations (Source: SciVal) Title

Authors

Year

Journal

Percentile

An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: A randomised controlled trial

Higginson, I.J., Bausewein, C., Reilly, C.C., Gao, W., Gysels, M., Dzingina, M., McCrone, P., Booth, S., Jolley, C.J., Moxham, J.

2014

The Lancet Respiratory Medicine

‘My body’s falling apart.’ Understanding the experiences Mason, B., Nanton, V., Epiphaniou, E., of patients with advanced multimorbidity to improve Murray, S.A., Donaldson, A., Shipman, care: Serial interviews with patients and carers C., Daveson, B.A., Harding, R., Higginson, I.J., Munday, D., Barclay, S., Dale, J., Kendall, M., Worth, A., Boyd, K.

2016

BMJ Supportive and Palliative Care

Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease

Davison, S.N., Jhangri, G.S., Koffman, J.

2014

BMJ Supportive and Palliative Care

Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: A randomised double-blind, placebo-controlled trial

Maddocks, M., Nolan, C.M., Man, W.D.-C., Polkey, M.I., Hart, N., Gao, W., Rafferty, G.F., Moxham, J., Higginson, I.J.

2016

The Lancet Respiratory Medicine

Sarcopenia in copd: Prevalence, clinical correlates and response to pulmonary rehabilitation

Jones, S.E., Maddocks, M., Kon, S.S.C., Canavan, J.L., Nolan, C.M., Clark, A.L., Polkey, M.I., Man, W.D.-C.

2015

Thorax

How many people need palliative care? A study developing and comparing methods for populationbased estimates

Murtagh, F.E.M., Bausewein, C., Verne, J., Iris Groeneveld, E., Kaloki, Y.E., Higginson, I.J.

2014

Palliative Medicine

Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review

Moens, K., Higginson, I.J., Harding, R.

2014

Journal of Pain and Symptom Management

Publications / 81

Title

Authors

Year

Journal

Percentile

Is a specialist breathlessness service more effective and Farquhar, M.C., Prevost, A.T., McCrone, cost-effective for patients with advanced cancer and P., Brafman-Price, B., Bentley, A., their carers than standard care? Findings of a mixedHigginson, I.J., Todd, C., Booth, S. method randomised controlled trial

2014

BMC Medicine

Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: A cohort study

Weingaertner, V., Scheve, C., Gerdes, V., Schwarz-Eywill, M., Prenzel, R., Bausewein, C., Higginson, I.J., Voltz, R., Herich, L., Simon, S.T.

2014

Journal of Pain and Symptom Management

Physical frailty and pulmonary rehabilitation in COPD: A prospective cohort study

Maddocks, M., Kon, S.S.C., Canavan, J.L., Jones, S.E., Nolan, C.M., Labey, A., Polkey, M.I., Man, W.D.-C.

2016

Thorax

Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): A systematic review

Lowther, K., Selman, L., Harding, R., Higginson, I.J.

2014

International Journal of Nursing Studies

Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: Does it make a difference? A systematic review

Etkind, S.N., Daveson, B.A., Kwok, W., Witt, J., Bausewein, C., Higginson, I.J., Murtagh, F.E.M.

2015

Journal of Pain and Symptom Management

Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors

Pivodic, L., Harding, R., Calanzani, N., McCrone, P., Hall, S., Deliens, L., Higginson, I.J., Gomes, B.

2016

Palliative Medicine

Functionally relevant cut point for isometric quadriceps muscle strength in chronic respiratory disease

Canavan, J.L., Maddocks, M., Nolan, C.M., Jones, S.E., Kon, S.S.C., Clark, A.L., Polkey, M.I., Man, W.D.-C.

2015

American Journal of Respiratory and Critical Care Medicine

Benchmarking the provision of palliative rehabilitation within the hospice setting

Wosahlo, P., Maddocks, M.

2015

Palliative Medicine

Liverpool Care Pathway for patients with cancer in hospital: A cluster randomised trial

Costantini, M., Romoli, V., Leo, S.D., Beccaro, M., Bono, L., Pilastri, P., Miccinesi, G., Valenti, D., Peruselli, C., Bulli, F., Franceschini, C., Grubich, S., Brunelli, C., Martini, C., Pellegrini, F., Higginson, I.J.

2014

The Lancet

Place of death in the population dying from diseases indicative of palliative care need: A cross-national population-level study in 14 countries

Pivodic, L., Pardon, K., Morin, L., Addington-Hall, J., Miccinesi, G., Cardenas-Turanzas, M., OnwuteakaPhilipsen, B., Naylor, W., Ramos, M.R., Van den Block, L., Wilson, D.M., Loucka, M., Csikos, A., Rhee, Y.J., Teno, J., Deliens, L., Houttekier, D., Cohen, J., De Groote, Z.D., Payne, S., Brearley, S., Caraceni, A., Pasman, R., Francke, A., Harding, R., Higginson, I.J., Kaasa, S., Linden, K., Pautex, S.

2015

Journal of Epidemiology and Community Health

Definition, categorization, and terminology of episodic breathlessness: Consensus by an international Delphi survey

Simon, S.T., Weingärtner, V., Higginson, I.J., Voltz, R., Bausewein, C.

2014

Journal of Pain and Symptom Management

Validity, reliability and ease of use of the disabilities of arm, shoulder and hand questionnaire in adults following stroke

Dalton, E., Lannin, N.A., Laver, K., Ross, L., Ashford, S., McCluskey, A., Cusick, A.

2016

Disability and Rehabilitation

Research priorities in spiritual care: An international survey of palliative care researchers and clinicians

Selman, L., Young, T., Vermandere, M., Stirling, I., Leget, C.

2014

Journal of Pain and Symptom Management

Understanding by older patients of dialysis and conservative management for chronic kidney failure

Tonkin-Crine, S., Okamoto, I., Leydon, G.M., Murtagh, F.E.M., Farrington, K., Caskey, F., Rayner, H., Roderick, P.

2015

American Journal of Kidney Diseases

82 / Cicely Saunders Institute

Title

Authors

Year

Journal

Exercise for cancer cachexia in adults: Executive Grande, A.J., Silva, V., Maddocks, M. summary of a Cochrane Collaboration systematic review

2015

Journal of Cachexia, Sarcopenia and Muscle

Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury

Harding, R., Gao, W., Jackson, D., Pearson, C., Murray, J., Higginson, I.J.

2015

Journal of Pain and Symptom Management

Validation of the Consensus-Definition for Cancer Cachexia and evaluation of a classification model-a study based on data from an international multicentre project (EPCRC-CSA)

Blum, D., Stene, G.B., Solheim, T.S., Fayers, P., Hjermstad, M.J., Baracos, V.E., Fearon, K., Strasser, F., Kaasa, S., Lieve, V.B., Koen, M., Sarah, B., Augusto, C., Joachim, C., Massimo, C., Anneke, F., Richard, H., Higginson, I.J., Stein, K., Karen, L., Guido, M., Breg je, O.-P., Koen, P., Roeline, P., Sophie, P., Sheila, P., Luc, D.

2014

Annals of Oncology

Palliative care for patients with advanced fibrotic lung Bajwah, S., Ross, J.R., Wells, A.U., disease: A randomised controlled phase II and feasibility Mohammed, K., Oyebode, C., Birring, trial of a community case conference intervention S.S., Patel, A.S., Koffman, J., Higginson, I.J., Riley, J.

2015

Thorax

Improving care for patients whose recovery is uncertain. The AMBER care bundle: Design and implementation

Carey, I., Shouls, S., Bristowe, K., Morris, M., Briant, L., Robinson, C., Caulkin, R., Griffiths, M., Clark, K., Koffman, J., Hopper, A.

2015

BMJ Supportive and Palliative Care

Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers

Antunes, B., Harding, R., Higginson, I.J.

2014

Palliative Medicine

Is dying in hospital better than home in incurable cancer and what factors influence this? A populationbased study

Gomes, B., Calanzani, N., Koffman, J., Higginson, I.J.

2015

BMC Medicine

The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before-after cluster phase II trial of outcomes reported by family members

Costantini, M., Pellegrini, F., Di Leo, S., Beccaro, M., Rossi, C., Flego, G., Romoli, V., Giannotti, M., Morone, P., Ivaldi, G.P., Cavallo, L., Fusco, F., Higginson, I.J.

2014

Palliative Medicine

Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: Are there transferable lessons? A longitudinal qualitative study

Epiphaniou, E., Shipman, C., Harding, R., Mason, B., Murray, S.A.A., Higginson, I.J., Daveson, B.A.

2014

Primary Care Respiratory Journal

Characteristics of episodic breathlessness as reported by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study

Weingärtner, V., Scheve, C., Gerdes, V., Schwarz-Eywill, M., Prenzel, R., Otremba, B., Mühlenbrock, J., Bausewein, C., Higginson, I.J., Voltz, R., Herich, L., Simon, S.T.

2015

Palliative Medicine

Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: A multicentre cohort analysis of a national clinical data Set

Turner-Stokes, L., Williams, H., Bill, A., Bassett, P., Sephton, K.

2016

BMJ Open

Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults

Simon, S.T., Higginson, I.J., Booth, S., Harding, R., Weingärtner, V., Bausewein, C.

2016

Cochrane Database of Systematic Reviews

Place and Cause of Death in Centenarians: A Population- Evans, C.J., Ho, Y., Daveson, B.A., Hall, Based Observational Study in England, 2001 to 2010 S., Higginson, I.J., Gao, W.

2014

PLoS Medicine

Maintaining dignity for residents of care homes: A qualitative study of the views of care home staff, community nurses, residents and their families

2014

Geriatric Nursing

Hall, S., Dodd, R.H., Higginson, I.J.

Percentile

Publications / 83

Publications in peer review journals 2014 Alexandrescu R, Bottle A, Jarman B, Aylin P (2014). Classifying hospitals as mortality outliers: logistic versus hierarchical logistic models. J Med Syst 38:29. doi:10.1007/s10916-014-0029-x. Alexandrescu R, Siegert RJ, Turner-Stokes L (2014). Functional Outcomes and Efficiency of Rehabilitation in a National Cohort of Patients with Guillain – Barre Syndrome and Other Inflammatory Polyneuropathies. PLoS ONE 9(11):e110532. doi:10.1371/journal. pone.0110532.

Dermatol 170:599–608. doi: 10.1111/ bjd.12644. Blum D, Koeberle D, Omlin, A, Walker J, Von Moos R, Mingrone W, de Wolf-Linder S, Hayoz S, Kaasa S, Strasser F, Ribi K (2014). Feasibility and acceptance of electronic monitoring of symptoms and syndromes using a handheld computer in patients with advanced cancer in daily oncology practice. Support Care Cancer 22(9):2425–34. doi:10.1007/ s00520-014-2201-8.

Antunes B, Harding R, Higginson IJ (2014). Implementing patient-reported outcome measures in palliative care clinical practice: A systematic review of facilitators and barriers. Palliat Med 28(2):158–75. doi:10.1177/0269216313491619.

Blum D, Selman LE, Agupio G, Mashao T, Mmoledi K, Moll T, Dinat N, Gwyther L, Sebuyira LM, Ikin B, Downing J, Kaasa, S, Higginson IJ, Harding R (2014). Self-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa. Health Qual Life Outcomes 12:118. doi:10.1186/s12955-014-0118-z.

Ashford S, Brown S, Turner-Stokes L. Systematic review of patient-reported outcome measures for functional performance in the lower limb. J Rehabil Med. 2014 Dec 18;47(1):9–17. doi: 10.2340/16501977-1889. PubMed PMID: 25314949.

Bone A, McGrath-Lone L, Day S, Ward H (2014). Inequalities in the care experiences of patients with cancer: analysis of data from the National Cancer Patient Experience Survey 2011–2012. BMJ open 4:e004567. doi:10.1136/ bmjopen-2013-004567.

Ashford S, Shuling B, Nyein Kyaw (2014). Supplementary prescribing for spasticity management. Nurse Prescribing 12(9):457–463. doi:10.12968/ npre.2014.12.9.457.

Bristowe K, Harris P (2014). Michel Foucault: discourse in the modern medical consultation. Med Educ 48:552– 53. doi:10.1111/medu.12466.

Ashford S, Slade M, Nair A, TurnerStokes L (2014). Arm Activity Measure (ArmA) Application for Recording Functional Gain Following Focal Spasticity Treatment. Int J Ther Rehabil 21(1):10–17. doi: 10.12968/ ijtr.2014.21.1.10.

Bristowe K, Patrick PL (2014). ‘Any questions?’ – Clinicians’ usage of invitations to ask questions (IAQs) in outpatient plastic surgery consultations. Patient Educ Couns 97(3):347–51. doi. org/10.1016/j.pec.2014.08.011.

Balendra R, Jones A, Jivraj N, Knights C, Ellis CM, Burman R, Turner MR, Leigh PN, Shaw CE, Al-Chalabi A (2014). Estimating clinical stage of amyotrophic lateral sclerosis from the ALS Functional Rating Scale. Amyotroph Lateral Scler Frontotemporal Degener 15(3–4):279–84. doi:10.3109/21678421.2014.897357.

Bristowe K, Shepherd K, Bryan L, Brown H, Carey I, Matthews B, O’Donoghue D, Vinen K, Murtagh FE (2014a). The development and piloting of the REnal specific Advanced Communication Training (REACT) programme to improve Advance Care Planning for renal patients. Palliat Med 28(4):360–66. doi:10.1177/0269216313510342.

Beynon T, Radcliffe E, Child F, Orlowska D, Whittaker S, Lawson S, Selman L, Harding R (2014). What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence. Br J

Calanzani N, Moens K, Cohen J, Higginson IJ, Harding R, Deliens L, Toscani F, Ferreira PL, Bausewein C, Daveson BA, Gysels M, Ceulemans L, Gomes B; Project PRISMA (2014). Choosing care homes as the least preferred place to die: a cross-national survey of

public preferences in seven European countries. BMC Palliat Care 13:48. doi:10.1186/1472-684X-13-48. Cappelli M, Koffman J (2014). Anticonvulsant prophylaxis in people with brain neoplasms: a limited systematic review. European Journal of Palliative Care 21(5):214–218. Clark KE, Burberry D, Sleeman KE, Prentice W (2014). Easing the transition: Acceptability and safety of the 50mL syringe pump in the acute general hospital setting. Palliat Med 28(1):90–1. doi:10.1177/0269216313504253. Costantini M, Pellegrine F, Di Leo S, Beccaro M, Rossi C, Flego G, Romoli V, Giannotti M, Morone P, Ivaldi GP, Cavallo L, Fusco F, Higginson IJ (2014). The Liverpool Care Pathway for cancer patients dying in hospital medical wards: A before–after cluster phase II trial of outcomes reported by family members. Palliat Med 28(1):10–17. doi:10.1177/0269216313487569. Costantini M, Romoli V, Leo SD, Beccaro M, Bono L, Pilastri P, Miccinesi G, Valenti D, Peruselli C, Bulli F, Franceschini C, Grubich S, Brunelli C, Martini C, Pellegrini F, Higginson IJ (2014). Liverpool Care Pathway for patients with cancer in hospital: a cluster randomised trial. Lancet 383(9913):226–37. doi:10.1016/s0140-6736(13)61725-0. Daveson BA, Alonso JP, Calanzani N, Ramsenthaler C, Gysels M, Antunes B, Moens K, Groeneveld EI, Albers G, Finetti S, Pettenati F, Bausewein C, Higginson IJ, Harding R, Deliens L, Toscani F, Ferreira PL, Ceulemans L, Gomes B (2014). Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe. Eur J Public Health 24(3):521–527. doi:10.1093/ eurpub/ckt029. Daveson BA, Harding R, Shipman C, Mason BL, Epiphaniou E, Higginson IJ, Ellis-Smith C, Henson L, Munday D, Nanton V, Dale JR, Boyd K, Worth A, Barclay S, Donaldson A, Murray S (2014). The Real-World Problem of Care Coordination: A Longitudinal Qualitative Study with Patients Living with Advanced Progressive Illness and Their Unpaid Caregivers. PLoS One 9(5):e95523. doi: 10.1371/journal. pone.0095523.

84 / Cicely Saunders Institute

Davison S, Jhangri G.S., Koffman J (2014). Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease BMJ Supportive and Palliative Care 2016;6:66–74. doi:10.1136/bmjspcare-2013-000610. Dietz I, Plog A, Jox RJ, Schulz C (2014). “Please describe from your point of view a typical case of an error in palliative care”: Qualitative data from an exploratory crosssectional survey study among palliative care professionals. Journal of palliative medicine 17(3):331-7. Downing J, Gomes B, Gikaara N, Munene G, Daveson BA, Powell RA, Mwangi-Powell FN, Higginson IJ, Harding R, Project PRISMA (2014). Public preferences and priorities for endof-life care in Kenya: a population-based street survey. BMC Palliat Care 13:4. doi:10.1186/1472-684x-13-4. Epiphaniou E, Shipman C, Harding R, Mason B, Murray SA, Higginson IJ, Daveson BA (2014). Coordination of end-of-life care for patients with lung cancer and those with advanced COPD: are there transferable lessons? A longitudinal qualitative study. Prim Care Respir J 23(1):46–51. doi:10.4104/ pcrj.2014.00004. Epiphaniou E, Shipman C, Harding R, Mason B, Murray SA, Higginson IJ, Daveson BA (2014). Avoid ‘prognostic paralysis’-just get ahead and plan and coordinate care. NPJ Prim Care Respir Med 24:14085. doi:10.1038/npjpcrm.2014.85. Evans CJ, Bone A, Morgan M, McCrone P, Gao W, Wright J, Hall S, Gomes B, Gordon E, Lindsey F, Bruni C, Taherzadeh S, Higginson IJ (2014). Optimising palliative care for frail elders in community settings; preferences for care and palliative outcomes in the last months of life. BMJ Support Palliat Care 4:111–2. doi:10.1136/bmjspcare-2014-000653.21. Evans CJ, Yuen Ho, Daveson BA, Hall S, Higginson IJ, Gao W, on behalf of the Guide Care project (2014a). Place and Cause of Death in Centenarians: A Population-Based Observational Study in England, 2001 to 2010. PLoS Med 11(6):e1001653. doi:10.1371/journal. pmed.1001653. Farrant L, Gwyther L, Dinat N, Mmoledi K, Hatta N, Harding, R (2014). Maintaining wellbeing for South Africans

on antiretroviral therapy: the burden of pain and symptoms is greater with longer ART exposure. South African Medical Journal 104(2): 119–23. doi: 10.7196/ SAMJ.7461. Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S (2014). Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med 12:194. doi:10.1186/s12916-014-0194-2. Gao W, Gulliford M, Bennett MI, Murtagh FE, Higginson IJ (2014b). Managing cancer pain at the end of life with multiple strong opioids: a populationbased retrospective cohort study in primary care. PLoS One 9(1):e79266. doi:10.1371/journal.pone.0079266. Gao W, Ho YK, Verne J, Gordon E, Higginson IJ (2014a). Geographical and temporal Understanding In place of Death in England (1984–2010): analysis of trends and associated factors to improve end-oflife Care (GUIDE_Care). Health Services and Delivery Research 2(42). doi:10.3310/ hsdr02420. Gao W, Verne J, Davies JM, Peacock J, Gordon E, Morris C, Greenough A, Higginson IJ (2014). Home deaths are more common at weekends and holiday periods among children and young people (CYP) who die from cancer. BMJ Support Palliat Care 4:113–14. doi:10.1136/ bmjspcare-2014-000653.27. Gomes B, Calanzani N, Higginson IJ (2014). Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers. JAMA 311(10):1060– 61. doi:10.1001/jama.2014.553. Goodwin L, Price A, Lee W, Rayner L, Moorey S, Monroe B, Sykes N, Hansford P, Higginson IJ, Hotopf M (2014). I’ve had a good life, what’s left is a bonus: Factor analysis of the Mental Adjustment to Cancer Scale in a palliative care population. Palliat Med 28(3):243–55. doi:10.1177/0269216313498435. Grande AJ, Silva V, Riera R, Medeiros A, Vitoriano SG, Peccin MS, Maddocks M (2014). Exercise for cancer cachexia in adults. Cochrane Database Syst Rev 11:Cd010804. doi:10.1002/14651858. CD010804.pub2.

Guo P, East L, Arthur A (2014). Thinking outside the black box: the importance of context in understanding the impact of a preoperative education nursing intervention among Chinese cardiac patients. Patient Education & Counselling, 95, 365-370. Hall S, Dodd RH, Higginson IJ (2014). Maintaining dignity for residents of care homes: a qualitative study of the views of care home staff, community nurses, residents and their families. Geriatr Nurs 35(1):55–60. doi:10.1016/j. gerinurse.2013.10.012. Hall S, Davies JM, Gao W, Higginson IJ (2014). Patterns of dignity-related distress at the end of life: A cross-sectional study of patients with advanced cancer and care home residents. Palliat Med 28(9):1118– 27. doi:10.1177/0269216314533740. Harding R (2014). Caregivers of people at the end of life: emerging evidence. Curr Opin Support Palliat Care 8(4):391–3. doi:10.1097/spc.0000000000000100. Harding R, Albertyn R, Sherr L, Gwyther L (2014). Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models, Interventions, and Outcomes. Journal of Pain and Symptom Management 47(3):642–651. doi: 10.1016/j. jpainsymman.2013.04.010. Harding R, Higginson IJ (2014). Inclusion of end-of-life care in the global health agenda. Lancet Global health 2(7):e375–6. doi:10.1016/s2214109x(14)70194-9. Harding R, Powell RA, Namisango E, Merriman A, Gikaara N, Ali Z, Higginson IJ (2014). Palliative carerelated self-report problems among cancer patients in East Africa: a two-country study. Support Care Cancer 22:3185–92. doi:10.1007/s00520-014-2301-5. Harding R, Sherr L (2014). Comment on ‘‘Pain in people living with HIV/AIDS: a systematic review (Parker et al. 2014)’’. Journal of the International AIDS Society 17:1909. doi: 10.7448/IAS.17.1.19096. Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ (2014). Availability of essential drugs for managing HIV-related pain and symptoms within

Publications / 85

120 PEPFAR-funded health facilities in East Africa: A cross-sectional survey with onsite verification. Palliat Med 28(4):293– 301. doi:10.1177/0269216313498637. Harding R, Selman L, Ali Z, Powell RA, Namisango E, Mwangi-Powell F, Gwyther L, Gikaara N, Higginson IJ, Siegert RJ (2014a). Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures. Health Qual Life Outcomes 12:80. doi:10.1186/1477-7525-12-80. Harding R, Simms V, Penfold S, Downing J, Namisango E, Powell RA, Mwangi-Powell F, Moreland S, Gikaara N, Atieno M, Higginson IJ (2014). Quality of life and wellbeing among HIV outpatients in East Africa: a multicentre observational study. BMC Infect Dis 14:613. doi:10.1186/s12879-014-0613-1. Harding R, Simms V, Penfold S, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Gikaara N, Atieno M, Kataike J, Nsubuga C, Munene G, Banga G, Higginson IJ (2014). The presence of CD4 counts for the management of HIV patients in East Africa: a multicentred study. AIDS Care 26(5):613– 8. doi:10.1080/09540121.2013.844765. Higginson IJ (2014). Making Palliative Care Matter. J Palliat Med 17(12):1292–1293. doi: 10.1089/ jpm.2014.9393. Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, McCrone P, Booth S, Jolley CJ, Moxham J (2014a). An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. The Lancet Respir Med 2(12):979–87. doi:10.1016/ S2213-2600(14)70226-7. Higginson IJ, Gomes B, Calanzani N, Gao W, Bausewein C, Daveson BA, Deliens L, Ferreira PL, Toscani F, Gysels M, Ceulemans L, Simon ST, Cohen J, Harding R; Project PRISMA (2014). Priorities for treatment, care and information if faced with serious illness: A comparative populationbased survey in seven European countries. Palliat Med 28(2):101–10. doi:10.1177/0269216313488989. Jackson D, McCrone P, Mosweu I, Siegert R, Turner-Stokes L (2014).

Service Use and Costs for People with Long-Term Neurological Conditions in the First Year following Discharge from In-Patient Neuro-Rehabilitation: A Longitudinal Cohort Study. PLoS One 9(11):e113056. doi:10.1371/journal. pone.0113056.

Maddocks M, Jones M, Snell T, Connolly B, de Wolf-Linder S, Moxham J, Rafferty GF (2014). Ankle dorsiflexor muscle size, composition and force with ageing and chronic obstructive pulmonary disease. Exp Physiol 99:1078–1088. doi:10.1113/expphysiol.2014.080093.

Johnsen AT, Petersen MA, Gluud C, Lindschou J, Fayers P, Sjøgren P, Pedersen L, Neergaard MA, Vejlgaard TB, Damkier A, Nielsen JB, Strömgren AS, Higginson IJ, Groenvold M (2014). Detailed statistical analysis plan for the Danish Palliative Care Trial (DanPaCT). Trials 15:376. doi:10.1186/1745-6215-15-376.

Maddocks M, Shrikrishna D, Vitoriano S, Natanek SA, Tanner RJ, Hart N, Kemp PR, Moxham J, Polkey MI, Hopkinson NS (2014). Skeletal muscle adiposity is associated with physical activity, exercise capacity and fibre shift in COPD. Eur Respir J 44:1188–98. doi:10.1183/09031936.00066414.

Khan SA, Gomes B, Higginson IJ (2014). End-of-life care-what do cancer patients want? Nat Rev Clin Oncol 11(2):100–8. doi:10.1038/nrclinonc.2013.217.

Man WD, Kon SS, Maddocks M (2014). Rehabilitation after an exacerbation of chronic respiratory disease. BMJ 349. doi:10.1136/bmj.g4370.

Koffman J (2014). Servicing multicultural needs at the end of life. J Ren Care 40 Suppl (1), 6–15. doi:10.1111/ jorc.12087.

Martin NH, Landau S, Janssen A, Lyall R, Higginson IJ, Burman R, McCrone P, Sakel M, Ellis CM, Shaw CE, Al-Chalabi A, Leigh PN, Goldstein LH (2014). Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS): a prospective population study. Amyotroph Lateral Scler Frontotemporal Degener 15(5–6):376–87. doi:10.3109/21678421. 2014.886700.

Koffman J, Goddard C, Silber E, Burman R, Shaw P, Barnes F, Speck P, Higginson IJ (2014). Comprehending the inexplicable: qualitative accounts of black Caribbean and white british people severely affected by multiple sclerosis. BMJ Support Palliat Care 4:A20. doi:10.1136/bmjspcare-2014-000654.54. Koffman J, Ho YK, Davies J, Gao W, Higginson IJ (2014). Does Ethnicity Affect Where People with Cancer Die? A Population-Based 10 Year Study. PLoS One 9(4):e95052. doi: 10.1371/journal. pone.0095052. Lowther K, Higginson IJ, Simms V, Gikaara N, Ahmed A, Ali Z, Afuande G, Kariuki H, Sherr L, Jenkins R, Selman L, Harding R (2014). A randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy: recruitment, refusal, randomisation and missing data. BMC Research Notes 7:600. doi:10.1186/17560500-7-600. Lowther K, Selman L, Harding R, Higginson IJ (2014a). Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): a systematic review. Int J Nurs Stud 51(8):1171–89. doi:10.1016/j. ijnurstu.2014.01.015.

Moens K, Higginson IJ, Harding R; EURO IMPACT (2014). Are There Differences in the Prevalence of Palliative Care–Related Problems in People Living With Advanced Cancer and Eight NonCancer Conditions? A Systematic Review. J Pain Symptom Manage 48:660–77. doi:10.1016/j.jpainsymman.2013.11.009. Murphy E, Germain MJ, Cairns H, Higginson IJ, Murtagh FE (2014). International variation in classification of dialysis withdrawal: a systematic review. Nephrol Dial Transplant 29(3):625–35. doi:10.1093/ndt/gft458. Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ (2014). How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med 28(1):49–58. doi:10.1177/0269216313489367. Murtagh F (2014). Can palliative care teams relieve some of the pressure on acute services? BMJ 348 doi:10.1136/ bmj.g3693.

86 / Cicely Saunders Institute

Namisango E, Banga G, Kataike J, Atieno M, Munene G, Moreland S, Downing J, Higginson IJ, Harding R, Gikaara N, Simms V, Mwangi-Powell F, Powell RA (2014). The HIV Basic Care Package: Where is it available and who receives it? Findings from a mixed methods evaluation in Kenya and Uganda. AIDS Care 26(9):1155–63. doi: 10.1080/09540121.2014.882489. Namisango E, Powell RA, Atuhaire L, Katabira ET, Mwangi-Powell F, Harding R (2014). Is Symptom Burden Associated with Treatment Status and Disease Stage among Adult HIV Outpatients in East Africa? J Palliat Med 17(3):304–12. doi:10.1089/jpm.2013.0291. O’Brien KK, Ibáñez-Carrasco F, Solomon P, Harding R, Cattaneo J, Chegwidden W, Gahagan J, Baxter L, Worthington C, Gayle P, Merritt B, Baltzer-Turje R, Iku N, Zack E (2014). Advancing research and practice in HIV and rehabilitation: a framework of research priorities in HIV, disability and rehabilitation. BMC Infect Dis 14:724. doi:10.1186/s12879-014-0724-8. O’Callaghan CC, McDermott F, Michael N, Daveson BA, Hudson PL, Zalcberg JR (2014). “A quiet still voice that just touches”: music’s relevance for adults living with life-threatening cancer diagnoses. Support Care Cancer 22:1037. doi:10.1007/s00520-013-2059-1. Oishi A, Murtaqh FE (2014). The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals. Palliat Med 28(9):1081– 1098. doi:10.1177/0269216314531999. Osborne TR, Ramsenthaler C, de WolfLinder S, Schey SA, Siegert RJ, Edmonds PM, Higginson IJ (2014). Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life. BMC Cancer 14:496. doi:10.1186/1471-2407-14-496. Penfold S, Simms V, Downing J, Powell RA, Mwangi-Powell F, Namisango E, Moreland S, Atieno M, Gikaara N, Kataike J, Kwebiha C, Munene G, Banga G, Higginson IJ, Harding R (2014). The HIV basic care package: where is it available and who receives it? Findings from a mixed methods evaluation in Kenya and Uganda. AIDS

care 26(9):1155–63. doi:10.1080/095401 21.2014.882489. Powell RA, Harding R, Namisango E, Katabira E, Gwyther L, Radbruch L, Murray SA, El-Ansary M, Leng M, Ajayi IO, Blanchard C, Kariuki H, Kasirye I, Namukwaya E, Gafer N, Casarett D, Atieno M, Mwangi-Powell FN (2014). Palliative care research in Africa: consensus building for a prioritized agenda. J Pain Symptom Manage 47:315–24. doi:10.1016/j. jpainsymman.2013.03.022. Powell RA, Namisango E, Gikaara N, Moyo S, Mwangi-Powell FN, Gomes B, Harding R (2014). Public priorities and preferences for end-of-life care in Namibia. J Pain Symptom Manage 47:620–30. doi:10.1016/j.jpainsymman.2013.04.004. Selman L, Speck P, Barfield RC, Gysels M, Higginson IJ, Harding R (2014). Holistic models for end of life care: Establishing the place of culture. Prog Palliat Care 22(2):80–87. doi:10.1179/17 43291X13Y.0000000063. Selman L, Young T, Vermandere M, Stirling I, Leget C; Research Subgroup of European Association for Palliative Care Spiritual Care Taskforce (2014). Research priorities in spiritual care: an international survey of palliative care researchers and clinicians. J Pain Symptom Manage 48:518–31. doi:10.1016/j. jpainsymman.2013.10.020. Sep MS, van Osch M, van Vliet LM, Smets EM, Bensing JM (2014). The power of clinicians’ affective communication: how reassurance about non-abandonment can reduce patients’ physiological arousal and increase information recall in bad news consultations. An experimental study using analogue patients. Patient Educ Couns 95:45–52. doi:10.1016/j.pec.2013.12.022. Sheehy-Skeffington B, McLean S, Bramwell M, O’leary N, O’gorman A (2014). Caregivers experiences of managing medications for palliative care patients at the end of life: A qualitative study. American Journal of Hospice and Palliative Medicine 31(2):148-54. Siegert RJ, Jackson DM, Playford ED, Fleminger S, Turner-Stokes L (2014). A longitudinal, multicentre, cohort study of community rehabilitation service delivery in long-term neurological conditions. BMJ open 4:e004231. doi:10.1136/bmjopen-2013-004231.

Siegert R, Selman L, Higginson IJ, Ali Z, Powell RA, Namisango E, MwangiPowell F, Gwyther L, Gikaara N, Harding R (2014). A psychometric evaluation of the functional assessment of chronic illness therapy-palliative care (FACITPal) scale with palliative care samples in three African countries. J Pain Symptom Manage 48(5):983–991. doi:10.1016/j. jpainsymman.2014.01.010. Siegert RJ, Turner-Stokes L. The Needs and Provision Complexity Scale: a first psychometric analysis using multi-centre data. Clinical Rehabilitation 2014; 28(7): 687–95. doi: 10.1177/0269215513513601. PMID: 24452703. Simon ST, Weingärtner V, Voltz R, Higginson IJ, Bausewein C (2014). Episodic breathlessness: a clinically relevant and rising issue. Ann Am Thorac Soc 11(2):274. doi:10.1513/ AnnalsATS.201311-407LE. Simon ST, Weingärtner V, Higginson IJ, Voltz R, Bausewein C (2014). Definition, categorization, and terminology of episodic breathlessness: consensus by an international Delphi survey. J Pain Symptom Manage 47(5):828–838. doi:10.1016/j.jpainsymman.2013.06.013. Sleeman KE (2014). The Liverpool Care Pathway: benefit or harm? J R Coll Physicians Edinb 44(3):214-5. doi: 10.4997/JRCPE.2014.306. Sleeman KE, Ho YK, Verne J, Gao W, Higginson IJ; GUIDE_Care project (2014). Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neorology 14:59. doi:10.1186/1471-2377-14-59. Sleeman KE, Murhagh FEM (2014). Increasing the value of research in palliative care. Palliat Med 28(10):1165–6. doi:10.1177/0269216314556718. Smith W, McCrone P, Goddard C, Gao W, Burman R, Jackson D, Higginson IJ, Silber E, Koffman J (2014). Comparisons of Costs between Black Caribbean and White British Patients with Advanced Multiple Sclerosis in the UK. Mult Scler Int 2014:12. doi: 10.1155/2014/613701. Streid J, Harding R, Agupio G, Dinat N, Downing J, Gwyther L, Ikin B, Mashao T, Mmoledi K, Moll AP,

Publications / 87

Sebuyira LM, Higginson IJ, Selman L (2014). Stressors and Resources of Caregivers of Patients With Incurable Progressive Illness in Sub-Saharan Africa. Qual health Res 24(3):317–28. doi:10.1177/1049732314523682. Talbot Rice H, Malcolm L, Norman K, Jones A, Lee K, Preston G, McKenzie D, Maddocks M (2014). An evaluation of the St Christopher’s Hospice rehabilitation gym circuits classes: Patient uptake, outcomes, and feedback. Prog Palliat Care 22(6):319–25. doi:10.1179/1743291x1 4y.0000000083. Turner-Stokes L (2014). Prolonged disorders of consciousness: new national clinical guidelines from the Royal College of Physicians, London. Clin Med 14(1):4–5. doi:10.7861/ clinmedicine.14-1-4. Turner-Stokes L, Fadyl J, Rose H, Williams H, Schlüter P, McPherson K (2014). The Work-ability Support Scale: evaluation of scoring accuracy and rater reliability. J Occup Rehabil 24:511–24. doi:10.1007/s10926-013-9486-1. Turner-Stokes L. Thu A, Williams H, Casey R, Rose H, Siegert RJ. The Neurological Impairment Scale: reliability and validity as a predictor of functional outcome in neurorehabilitation. Disability and Rehabilitation 2014;36(1):23–31 doi: 10.3109/09638288.2013.775360. PMID: 23721497. van Osch M, Sep M, van Vliet LM, van Dulmen S, Bensing JM (2014). Reducing Patients’ Anxiety and Uncertainty, and Improving Recall in Bad News Consultations. Health psychol 33(11):1382–1390. doi:10.1037/ hea0000097. van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ on behalf of EUROIMPACT(2014). Creating guidance for the use of patient reported outcome measures (PROMS) in clinical palliative care. BMJ Supportive & Palliative Care 4:113. doi:10.1136/ bmjspcare-2014-000653.25. van Vliet LM, Epstein AS (2014). Current state of the art and science of patient-clinician communication in progressive disease: patients’ need to know and need to feel known. J Clin Oncol 32(31):3474–8. doi:10.1200/ jco.2014.56.0425.

Weingaertner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; PAALiativ Project; PAALiativ Project (2014). Breathlessness, functional status, distress, and palliative care needs over time in patients with advanced chronic obstructive pulmonary disease or lung cancer: a cohort study. J Pain Symptom Manage 48(4):569–81 e1. doi:10.1016/j.jpainsymman.2013.11.011. West E, Romoli V, Di Leo S, Higginson IJ, Miccinesi G, Costantini M (2014). Feasibility of assessing quality of care at the end of life in two cluster trials using an after-death approach with multiple assessments. BMC Palliat Care 13:36. doi:10.1186/1472-684X-13-36.

Publications in peer review journals 2015 Alexandrescu R, Bottle A, Hua Jen M, Jarman B, Aylin P (2015). The US hospital standardised mortality ratio: Retrospective database study of Massachusetts hospitals. JRSM open 6(1):1–8. doi:10.1177/2054270414559083. Alexandrescu R, Siegert RJ, TurnerStokes L (2015a). The Northwick Park Therapy Dependency Assessment scale: a psychometric analysis from a large multicentre neurorehabilitation dataset. Disabil and Rehabil 37:2, 1976–1983. doi 10.3109/09638288.2014.998779. Andiappan M, Gao W, Bernabé E, Kandala NB, Donaldson AN (2015). Malocclusion, orthodontic treatment, and the Oral Health Impact Profile (OHIP-14): Systematic review and meta-analysis. Angle Orthod 85(3):493–500. doi:10.2319/051414-348.1. Ang K, Umapathi T, Tong J, Ng J, Tseng LJ, Woo IM (2015). Healthcare Needs of Patients with Amyotrophic Lateral Sclerosis (ALS) in Singapore: A patientcentred qualitative study from multiple perspectives. Journal of palliative care 31(3):150-7. Antunes B, Murtagh F, Bausewein C, Harding R, Higginson IJ; EURO IMPACT (2015). Screening for depression in advanced disease: psychometric properties, sensitivity, and

specificity of two items of the Palliative Care Outcome Scale (POS). J Pain Symptom Management 49(2):277–88. doi:10.1016/j.jpainsymman.2014.06.014. Ashford S, Brown S, Turner-Stokes L (2015). Systematic review of patient-reported outcome measures for functional performance in the lower limb. J Rehabil Med 47:9–17. doi:10.2340/16501977-1889. Ashford S, Jackson D, Turner-Stokes L (2015a). Goal setting, using goal attainment scaling, as a method to identify patient selected items for measuring arm function. Physiotherapy 101(1):88–94. doi:10.1016/j.physio.2014.04.001. Bajwah S, Ross JR, Wells AU, Mohammed K, Oyebode C, Birring SS, Patel AS, Koffman J, Higginson IJ, Riley J (2015). Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention. Thorax 70:830–9. doi:10.1136/thoraxjnl-2014-206583. Beynon T, Selman L, Radcliffe E, Whittaker S, Child F, Orlowska D, Morgans C, Morris S, Harding R (2015). ‘We had to change to single beds because I itch in the night’: a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T-cell lymphoma. Br J Dermotal 173(1):83–92. doi:10.1111/bjd.13732. Breckenridge K, Bekker HL, Gibbons E, van der Veer SN, Abbott D, Briançon S, Cullen R, Garneata L, Jager KJ, Lønning K, Metcalfe W, Morton RL, Murtagh FE, Prutz K, Robertson S, Rychlik I, Schon S, Sharp L, Speyer E, Tentori F, Caskey FJ (2015). How to routinely collect data on patient-reported outcome and experience measures in renal registries in Europe: an expert consensus meeting. Nephrol Dial Transplant 30:1605-1614. doi:10.1093/ ndt/gfv209. Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Caulkin R, Higginson IJ, Koffman J (2015a). Patient and carer experiences of clinical uncertainty and deterioration, in the face of limited reversibility: A comparative observational study of the AMBER care bundle. Palliat Med 29(9):797–807. doi:10.1177/0269216315578990. Bristowe K, Horsley HL, Shepherd K, Brown H, Carey I, Matthews B,

88 / Cicely Saunders Institute

O’Donoghue D, Vinen K, Murtagh FE (2015).Thinking ahead--the need for early Advance Care Planning for people on haemodialysis: A qualitative interview study. Palliat Med 29(5):443–50. doi:10.1177/0269216314560209. Bristowe K, Selman L, Murtagh FE (2015). Qualitative research methods in renal medicine: an introduction. Nephrol Dial Transplant 30:1424–31. doi:10.1093/ ndt/gfu410. Canavan JL, Maddocks M, Nolan CM, Jones SE, Kon SS, Clark AL, Polkey MI, Man WD (2015). Functionally Relevant Cut Point for Isometric Quadriceps Muscle Strength in Chronic Respiratory Disease. Am J Respir Crit Care Med 192(3):395–7. doi:10.1164/ rccm.201501-0082LE. Carey I, Shouls S, Bristowe K, Morris M, Briant L, Robinson C, Caulkin R, Griffiths M, Clark K, Koffman J, Hopper A (2015). Improving care for patients whose recovery is uncertain. The AMBER care bundle: design and implementation. BMJ Support Palliat Care 5:12–18. doi:10.1136/ bmjspcare-2013-000634. Collis E, Mather H (2015). Nausea and vomiting in palliative care. BMJ 3;351:h6249. doi:10.1136/bmj.h6249 Collins ES, Witt J, Bausewein C, Daveson BA, Higginson IJ, Murtagh FE (2015). A Systematic Review of the Use of the Palliative Care Outcome Scale and the Support Team Assessment Schedule in Palliative Care. J Pain Symptom Manage 50(6):842–53 e19. doi:10.1016/j. jpainsymman.2015.07.015. Currow DC, Higginson IJ (2015). Cochrane Reviews: Four Proposals for Improvement. J Palliat Med 18(11):906–7. doi:10.1089/jpm.2015.0382. Daveson BA, de Wolf-Linder S, Witt J, Newson K, Morris C, Higginson IJ, Evans CJ; BuildCARE (2015). Results of a transparent expert consultation on patient and public involvement in palliative care research. Palliat Med 29(10):939–49. doi:10.1177/0269216315584875. Davison SN, Levin A, Moss AH, Jha V, Brown EA, Brennan F, Murtagh FE, Naicker S, Germain MJ, O’Donoghue DJ, Morton RL, Obrador GT (2015). Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease:

developing a roadmap to improving quality care. Kidney Int 88(3):447–59. doi:10.1038/ki.2015.110.

work-ability support scale (WSS). Disabil Rehabil 37(3):247–58. doi:10.3109/09638 288.2014.914586.

de Brito M, Gomes B (2015). Non-cancer palliative care in the community needs greater interprofessional collaboration to maintain coordinated care and manage uncertainty. Evidence-based nursing 18:79. doi:10.1136/eb-2014-102029.

Fegg M, Lehner M, Simon ST, Gomes B, Higginson IJ, Bausewein C (2015). [What influences end-of-life decisions? Results of a representative German survey]. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz 58:1118–23. doi:10.1007/ s00103-015-2219-1.

Di Leo S, Romoli V, Higginson IJ, Bulli F, Fantini S, Sguazzotti E, Costantini M (2015). ‘Less ticking the boxes, more providing support’: A qualitative study on health professionals’ concerns towards the Liverpool Care of the Dying Pathway. Palliat Med 29(6):529–537. doi:10.1177/0269216315570408. Dunger C, Higginson IJ, Gysels M, Booth S, Simon ST, Bausewein C (2015). Breathlessness and crises in the context of advanced illness: A comparison between COPD and lung cancer patients. Palliat Support Care 13:229–237. doi: 10.1017/ S147895151300120X. Dzingina MD, Higginson IJ (2015). Public Health and Palliative Care in 2015. Clin Geriatr Med 31(2):253–263. doi:10.1016/j.cger.2015.01.002. Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, Murtagh FE (2015a). Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review. J Pain Symptom Manage 49(3):611–24. doi:10.1016/j.jpainsymman.2014.07.010. Etkind SN, Karno J, Edmonds PM, Carey I, Murtagh FE (2015). Supporting patients with uncertain recovery: the use of the AMBER care bundle in an acute hospital. BMJ Support Palliat Care 5(1):95–8. doi:10.1136/ bmjspcare-2013-000640. Evans CJ, Bone AE, Yi D, Wei G, Gomes B, Maddocks M, Sleeman KE, Wright J, McCrone P, Higginson IJ (2015). Factors Associated with End of Life Transition for Older Adults Living at Home: Analysis of Carers’ PostBereavement Survey. BMJ Supportive & Palliative Care 5:116. doi:10.1136/ bmjspcare-2014-000838.37. Fadyl JK, McPherson KM, Schluter PJ, Turner-Stokes L (2015). Development of a new tool to evaluate work support needs and guide vocational rehabilitation: the

Fheodoroff K, Ashford S, Jacinto J, Maisonobe P, Balcaitiene J, TurnerStokes L (2015). Factors influencing goal attainment in patients with post-stroke upper limb spasticity following treatment with botulinum toxin A in real-life clinical practice: sub-analyses from the Upper Limb International Spasticity (ULIS)-II Study. Toxins 7(4):1192–205. doi:10.3390/toxins7041192. Gomes B (2015). Palliative care: if it makes a difference, why wait? J Clin Oncol 33(13):1420–1. doi:10.1200/ JCO.2014.60.5386. Gomes B, Calanzani N, Koffman J, Higginson IJ (2015a). Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med 13:235. doi:10.1186/s12916-015-0466-5. Gough N, Ross JR, Riley J, Judson I, Koffman J (2015).’When something is this rare … how do you know bad really is bad…?’-views on prognostic discussions from patients with advanced soft tissue sarcoma. BMJ Support Palliat Care 0:1–8 doi:10.1136/bmjspcare-2015-000898. Grande AJ, Silva V, Maddocks M (2015). Exercise for cancer cachexia in adults: Executive summary of a Cochrane Collaboration systematic review. J Cachexia Sarcopenia Muscle 6:208–11. doi:10.1002/jcsm.12055. Guo P (2015). Preoperative education interventions to reduce anxiety and improve recovery among cardiac surgery patients: A review of randomised controlled trials. Journal of Clinical Nursing 24, 34-46. Gysels M, Reilly CC, Jolley CJ, Pannell C, Spoorendonk F, Bellas H, Madan P, Moxham J, Higginson IJ, Bausewein C (2015). How does a new breathlessness support service affect patients? Eur Respir J 46:1515–1518. doi:10.1183/13993003.00751-2015.

Publications / 89

Harding R, Downing J, Ekstrand M, Gwyther L, Sherr L (2015). Evidencebased programming of HIV care and support: is the psychosocial “optional”? Journal of Acquired Immune Deficiency Syndromes 70(5):e176-e177. doi: 10.1097/QAI.0000000000000713.

Jones SE, Maddocks M, Kon SS, Canavan JL, Nolan CM, Clark AL, Polkey MI, Man WD (2015). Sarcopenia in COPD: prevalence, clinical correlates and response to pulmonary rehabilitation. Thorax 70:213–218. doi:10.1136/ thoraxjnl-2014-206440.

Harding R, Gao W, Jackson D, Pearson C, Murray J, Higginson IJ (2015). Comparative Analysis of Informal Caregiver Burden in Advanced Cancer, Dementia, and Acquired Brain Injury. Journal of Pain and Symptom Management 50(4):445–52. doi:10.1016/j. jpainsymman.2015.04.005.

Kane PM, Daveson BA, Ryan K, McQuillan R, Higginson IJ, Murtagh FE; BuildCARE (2015). The need for palliative care in Ireland: a populationbased estimate of palliative care using routine mortality data, inclusive of nonmalignant conditions. J Pain Symptom Manage 49(4):726–33 e1. doi:10.1016/j.jpainsymman.2014.09.011.

Harding R, Lampe F, Molloy T, Sherr L (2015). Do Web-based and clinic samples of gay men living with HIV differ on self-reported physical and psychological symptoms? A comparative analysis. J Med Internet Res 17(3):e57. doi:10.2196/ jmir.3800. Henson LA, Gao W, Higginson IJ, Smith M, Davies J, Ellis-Smith C, Daveson B (2015). Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis. J Clin Oncol 33(4):370–6. doi:10.1200/ JCO.2014.57.3568. Higginson IJ, Gao W, Jolley CJ, Reilly CC, Bausewein C, Dzingina M, Moxham J (2015).Twitter discussions from a respirology journal club – authors’ reply. Lancet Respir Med 3(4):e10–1. doi:10.1016/S2213-2600(15)00112-5. Hussain JA, Flemming K, Murtagh FE, Johnson MJ (2015). Patient and health care professional decision-making to commence and withdraw from renal dialysis: a systematic review of qualitative research. Clin J Am Soc Nephrol 10(7):1201–15. doi:10.2215/ CJN.11091114. Hutchinson A, Booth S, Currow D, Higginson I, Johnson M (2015). Invisible suffering: breathlessness in and beyond the clinic--a reply. Lancet Respir Med 3(8):e29. doi: 10.1016/S2213-2600(15)00232-5. Jacinto A, Masembe V, Tumwesigye NM, Harding R (2015). The prevalence of life-limiting illness at a Ugandan National Referral Hospital: a 1-day census of all admitted patients. BMJ Support Palliat Care 5:196–199. doi:10.1136/ bmjspcare-2013-000631.

Kane PM, Murtagh FE, Ryan K, Mahon NG, McAdam B, McQuillan R, Ellis-Smith C, Tracey C, Howley C, Raleigh C, O’Gara G, Higginson IJ, Daveson BA (2015a). The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure. Heart Fail Rev 20:673–87. doi:10.1007/ s10741-015-9508-5. Koffman J, Goddard C, Gao W, Jackson D, Shaw P, Burman R, Higginson IJ, Silber E (2015). Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people. BMC Palliat Care 14:13. doi:0.1186/s12904015-0017-z. Lifford KJ, Witt J, Burton M, Collins K, Caldon L, Edwards A, Reed M, Wyld L, Brain K (2015). Understanding older women’s decision making and coping in the context of breast cancer treatment. BMC Med Inform Decis Mak 15:45. doi:10.1186/s12911-015-0167-1. Lowney AC, Myles HT, Bristowe K, Lowney EL, Shepherd K, Murphy M, O’Brien T, Casserly L, McQuillan R, Plant WD, Conlon PJ, Vinen C, Eustace JA, Murtagh FE (2015). Understanding What Influences the Health-Related Quality of Life of Hemodialysis Patients: A Collaborative Study in England and Ireland. J Pain Symptom Manage 50(6):778–85. doi:10.1016/j. jpainsymman.2015.07.010. Lowther K, Selman L, Simms V, Gikaara N, Ahmed A, Ali Z, Kariuki H, Sherr L, Higginson IJ, Harding R (2015). Nurse-led palliative care for

HIV-positive patients taking antiretroviral therapy in Kenya: a randomised controlled trial. The Lancet HIV 2(8):e328–34. doi:10.1016/S2352-3018(15)00111-3. Maddocks M, Jones SE, Kon SS, Canavan JL, Nolan CM, Clark AL, Polkey MI, Man WD (2015). Sarcopenia definitions: where to draw the line? Response to Scarlata et al. Thorax 70(7):694. doi:10.1136/ thoraxjnl-2015-207041. Maddocks M, Kon SS, Jones SE, Canavan JL, Nolan CM, Higginson IJ, Gao W, Polkey MI, Man WD (2015). Bioelectrical impedance phase angle relates to function, disease severity and prognosis in stable chronic obstructive pulmonary disease. Clin Nutr 34(6):1245–50. doi:10.1016/j. clnu.2014.12.020. Maddocks M, Kon SS, Singh SJ, Man WD (2015). Rehabilitation following hospitalization in patients with COPD: can it reduce readmissions? Respirology 20:395–404. doi:10.1111/resp.12454. Martin S, Bristowe K (2015). Last offices: nurses’ experiences of the process and their views about involving significant others. Int J Palliat Nurs 21(4):173–8. doi:10.12968/ijpn.2015.21.4.173. McAteer A, Yi D, Watson V, Norwood P, Ryan M, Hannaford PC, Elliott AM (2015). Exploring preferences for symptom management in primary care: a discrete choice experiment using a questionnaire survey. Br J Gen Pract 65(636):e478–88. doi:10.3399/bjgp15X685705. Moens K, Houttekier D, Van den Block L, Harding R, Morin L, Marchetti S, Csikos A, Loucka M, Naylor WA, Wilson DM, Teno J, Cardenas-Turanzas M, Rhee Y, Garcia-Leon FJ, Deliens L, Cohen J (2015). Place of death of people living with Parkinson’s disease: a populationlevel study in 11 countries. BMC Palliat Care 14:28. doi:10.1186/s12904-0150021-3. Moens K, Siegert RJ, Taylor S, Namisango E, Harding R; ENCOMPASS; EURO IMPACT (2015). Symptom Clusters in People Living with HIV Attending Five Palliative Care Facilities in Two Sub-Saharan African Countries: A Hierarchical Cluster Analysis. PLoS One 10(5):e0126554. doi:10.1371/journal.pone.0126554.

90 / Cicely Saunders Institute

Murtagh FE (2015). What matters time? The importance of time for those with advanced progressive disease and their families. Palliat Med 29(1):3–4. doi:10.1177/0269216314559899. Namisango E, Harding R, Katabira ET, Siegert RJ, Powell RA, Atuhaire L, Moens K, Taylor S (2015). A novel symptom cluster analysis among ambulatory HIV/AIDS patients in Uganda. AIDS Care 27(8):954–963. doi:1 0.1080/09540121.2015.1020749. Okamoto I, Tonkin-Crine S, Rayner H, Murtagh FE, Farrington K, Caskey F, Tomson C, Loud F, Greenwood R, O’Donoghue DJ, Roderick P (2015). Conservative care for ESRD in the United Kingdom: a national survey. Clin J Am Soc Nephrol 10:120–126. doi:10.2215/CJN.05000514. Osborne TR, Ramsenthaler C, Schey SA, Siegert RJ, Edmonds PM, Higginson IJ (2015). Improving the assessment of quality of life in the clinical care of myeloma patients: the development and validation of the Myeloma Patient Outcome Scale (MyPOS). BMC Cancer 15:280. doi:10.1186/s12885-015-1261-6. Patel AS, Siegert RJ, Bajwah S, Brignall K, Gosker HR, Moxham J, Maher TM, Renzoni EA, Wells AU, Higginson IJ, Birring SS (2015). Rasch analysis and impact factor methods both yield valid and comparable measures of health status in interstitial lung disease. J Clin Epidemiol 68:1019–27. doi:10.1016/j. jclinepi.2015.03.021. Pike S, Lannin NA, Cusick A, Wales K, Turner-Stokes L, Ashford S (2015). A systematic review protocol to evaluate the psychometric properties of measures of function within adult neurorehabilitation. Syst Rev 4:86. doi:10.1186/ s13643-015-0076-5. Ryan M, Yi D, Avenell A, Douglas F, Aucott L, van Teijlingen E, Vale L (2015). Gaining pounds by losing pounds: preferences for lifestyle interventions to reduce obesity. Health Econ Policy Law 10(2):161–82. doi:10.1017/ S1744133114000413. Selman LE, Brighton LJ, Harding R (2015). Palliative and supportive care needs of heart failure patients in Africa: a review of recent developments. Curr Opin Support Palliat Care 9(1):20–5. doi:10.1097/SPC.0000000000000107.

Selman LE, McDermott K, Donesky D, Citron T, Howie-Esquivel J (2015). Appropriateness and acceptability of a Tele-Yoga intervention for people with heart failure and chronic obstructive pulmonary disease: qualitative findings from a controlled pilot study. BMC Complement Altern Med 15:21. doi:10.1186/s12906-015-0540-8. Selman LE, Beynon T, Radcliffe E, Whittaker S, Orlowska D, Child F, Harding R (2015). ‘We’re all carrying a burden that we’re not sharing’ – A qualitative study of the impact of cutaneous T-cell lymphoma on the family. Br J Dermatol 172(6):1581–92. doi:10.1111/bjd.13583. Singh T, Harding R (2015). Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes. BMC Res Notes 8:172. doi:10.1186/s13104-0151102-3. Sleeman KE, Koffman J, Bristowe K, Rumble C, Burman R, Leonard S, Noble J, Dampier O, Bernal W, Morgan M, Hopkins P, Prentice W, Higginson IJ (2015). ‘It doesn’t do the care for you’: a qualitative study of health care professionals’ perceptions of the benefits and harms of integrated care pathways for end of life care. BMJ open 5:e008242. doi:10.1136/bmjopen-2015-008242. Tonkin-Crine S, Okamoto I, Leydon GM, Murtagh FE, Farrington K, Caskey F, Rayner H, Roderick P (2015a). Understanding by older patients of dialysis and conservative management for chronic kidney failure. Am J Kidney Dis 65(3):443–50. doi:10.1053/j. ajkd.2014.08.011. Tonkin-Crine S, Santer M, Leydon GM, Murtagh FE, Farrington K, Caskey F, Rayner H, Roderick P (2015b). GPs’ views on managing advanced chronic kidney disease in primary care: a qualitative study. Br J Gen Pract 65(636):e469–77. doi:10.3399/ bjgp15X685693. Too W, Watson M, Harding R, Seymour J (2015). Living with AIDS in Uganda: a qualitative study of patients’ and families’ experiences following referral to hospice. BMC Palliat Care 14:67. doi:10.1186/s12904-015-0066-3. Turner-Stokes L, Bassett P, Rose H, Ashford S, Thu A (2015). Serial

measurement of Wessex Head Injury Matrix in the diagnosis of patients in vegetative and minimally conscious states: a cohort analysis. BMJ open 5(4):e006051. doi:10.1136/bmjopen-2014-006051. Turner-Stokes L, Rose H, Ashford S, Singer B (2015). Patient engagement and satisfaction with goal planning: Impact on outcome from rehabilitation. International Journal of Therapy and Rehabilitation 22(5):210–16. doi:10.12968/ ijtr.2015.22.5.210. Turner-Stokes L, Vanderstay R, Stevermuer T, Simmonds F, Khan F, Eagar K (2015a). Comparison of Rehabilitation Outcomes for Long Term Neurological Conditions: A Cohort Analysis of the Australian Rehabilitation Outcomes Centre Dataset for Adults of Working Age. PLoS One 10(7):e0132275. doi:10.1371/journal.pone.0132275. van der Geest IM, van den Heuvel-Eibrink MM, Falkenburg N, Michiels EM, van Vliet L, Pieters R, Darlington AS (2015). Parents’ Faith and Hope during the Pediatric Palliative Phase and the Association with LongTerm Parental Adjustment. J Palliat Med 18(5):402–7. doi:10.1089/jpm.2014.0287. van der Geest IM, van den Heuvel-Eibrink MM, van Vliet LM, Pluijm SM, Streng IC, Michiels EM, Pieters R, Darlington AS (2015). Talking about Death with Children with Incurable Cancer: Perspectives from Parents. J Pediatr 167(6):1320–6. doi:10.1016/j. jpeds.2015.08.066. van Vliet LM, Harding R, Bausewein C, Payne S, Higginson IJ; EUROIMPACT (2015). How should we manage information needs, family anxiety, depression, and breathlessness for those affected by advanced disease: development of a Clinical Decision Support Tool using a Delphi design. BMC Med 13:263. doi:10.1186/s12916-015-0449-6. van Vliet LM, Lindenberger E, van Weert JC (2015). Communication with Older, Seriously Ill Patients. Clin Geriatr Med 31(2):219–30. doi:10.1016/j. cger.2015.01.007 Weingärtner V, Scheve C, Gerdes V, Schwarz-Eywill M, Prenzel R, Otremba B, Mühlenbrock J, Bausewein C, Higginson IJ, Voltz R, Herich L, Simon ST; PAALiativ. (2015). Characteristics of episodic breathlessness as reported

Publications / 91

by patients with advanced chronic obstructive pulmonary disease and lung cancer: Results of a descriptive cohort study. Palliat Med 29(5):420–8. doi:10.1177/0269216314563428. Weisser FB, Bristowe K, Jackson D (2015). Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews. Palliat Med 29(8):737–45. doi:10.1177/0269216315575851. Wosahlo P, Maddocks M (2015). Benchmarking the provision of palliative rehabilitation within the hospice setting. Palliat Med 29(5):477–8. doi:10.1177/0269216314564240.

Publications in peer review journals 2016 Ashford S, Fheodoroff K, Jacinto J, Turner-Stokes L (2016a). Common goal areas in the treatment of upper limb spasticity: a multicentre analysis. Clin Rehabil 30(6):617–22. doi:10.1177/0269215515593391. Ashford S, Siegert RJ, Alexandrescu R (2016). Rasch measurement: the Arm Activity measure (ArmA) passive function sub-scale. Disabil Rehabil 38(4):384–90. doi:10.3109/09638288.2015.1041613. Ashford S, Jackson D, TurnerStokes L. (2016c) Development of a measure of therapy provision for spasticity management in the paretic lower limb – the Leg Therapy recording Schedule (LegTS). Disability and Rehabilitation Dec 7:1–7. doi: 10.1080/09638288.2016.1258435. [Epub ahead of print] PubMed PMID: 27927020. Bausewein C, Daveson BA, Currow DC, Downing J, Deliens L, Radbruch L, Defilippi K, Lopes Ferreira P, Costantini M, Harding R, Higginson IJ (2016). EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement. Palliat Med 30(1):6–22. doi:10.1177/0269216315589898.

Bogosian A, van Vliet LM, Craig G, Fraser LK, Turner-Cobb JM (2016). Minding the gap and moving forward in children’s long-term conditions: A vital role for health psychology. Br J Health Psychol 21(3):493–8. doi:10.1111/ bjhp.12193. Boland JW, Reigada C, Yorke J, Hart SP, Bajwah S, Ross J, Wells A, Papadopoulos A, Currow DC, Grande G, Macleod U, Johnson MJ (2016). The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease. J Palliat Med 19(5):549–55. doi:10.1089/ jpm.2015.0355. Bone AE, Gao W, Gomes B, Sleeman KE, Maddocks M, Wright J, Yi D, Higginson IJ, Evans CJ; OPTCare Elderly (2016a). Factors Associated with Transition from Community Settings to Hospital as Place of Death for Adults Aged 75 and Older: A Population-Based Mortality Follow-Back Survey. J Am Geriatr Soc 64:2210–2217. doi:10.1111/jgs.14442. Bone AE, Morgan M, Maddocks M, Sleeman KE, Wright J, Taherzadeh S, Ellis-Smith C, Higginson IJ, Evans CJ (2016b). Developing a model of shortterm integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders. Age Ageing 45:863–873. doi:10.1093/ageing/afw124. Brighton LJ, Bristowe K (2016). Communication in palliative care: talking about the end of life, before the end of life. Postgrad Med J 92:466–70. doi:10.1136/ postgradmedj-2015-133368. Bristowe K, Marshall S, Harding R (2016). The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med 30(8):730–44. doi:10.1177/0269216316634601. Brown D, Claffey A, Harding R (2016). Evaluation of a physiotherapy-led group rehabilitation intervention for adults living with HIV: referrals, adherence and outcomes. AIDS Care 28:12, 1495– 1505. doi:10.1080/09540121.2016. 1191611:1-11. Brown EA, Bekker HL, Davison SN, Koffman J, Schell JO (2016). Supportive Care: Communication Strategies to Improve Cultural Competence in Shared

Decision Making. Clin J Am Soc Nephrol 11(10):1902–1908. doi:10.2215/ CJN.13661215. Calanzani N, Higginson IJ, Koffman J, Gomes B (2016). Factors Associated with Participation, Active Refusals and Reasons for Not Taking Part in a Mortality Followback Survey Evaluating End-ofLife Care. PLoS One 11(1):e0146134. doi:10.1371/journal.pone.0146134. Cassel JB, Del Fabbro E, Arkenau T, Higginson IJ, Hurst S, Jansen LA, Poklepovic A, Rid A, Rodón J, Strasser F, Miller FG (2016). Phase I Cancer Trials and Palliative Care: Antagonism, Irrelevance, or Synergy? J Pain Symptom Manage 52(3):437–45. doi:10.1016/j. jpainsymman.2016.02.014. Coombes LH, Wiseman T, Lucas G, Sangha A, Murtagh FE (2016). Healthrelated quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use. Palliat Med 30(10):935– 949. doi:10.1177/0269216316649155. Costantini M, Rabitti E, Beccaro M, Fusco F, Peruselli C, La Ciura P, Valle A, Suriani C, Berardi MA, Valenti D, Mosso F, Morino P, Zaninetta G, Tubere G, Piazza M, Sofia M, Di Leo S, Higginson IJ (2016). Validity, reliability and responsiveness to change of the Italian palliative care outcome scale: a multicenter study of advanced cancer patients. BMC Palliat Care 15:23. doi:10.1186/s12904016-0095-6. Cox S, Murtagh FE, Tookman A, Gage A, Sykes N, McGinn M, Kathoria M, Wilderspin H, Chart L (2016). A review of specialist palliative care provision and access across London–mapping the capital. London J Prim Care (Abingdon). 9:3, 33–37. doi:10.1080/17571472.2016. 1256045. Currow DC, Abernethy AP, Allcroft P, Banzett RB, Bausewein C, Booth S, Carrieri-Kohlman V, Davidson P, Disler R, Donesky D, Dudgeon D, Ekström M, Farquhar M, Higginson IJ, Janssen D, Jensen D, Jolley C, Krajnik M, Laveneziana P, McDonald C, Maddocks M, Morelot-Panzini C, Moxham J, Mularski RA, Noble S, O’Donnell D, Parshall MB, Pattinson K, Phillips J, Ross J, Schwartzstein RM, Similowski T, Simon ST, Smith T, Wells A, Yates P, Yorke J, Johnson M

92 / Cicely Saunders Institute

(2016). The need to research refractory breathlessness. Eur Respir J 47:342–3. doi:10.1183/13993003.00653-2015. Currow DC, Davidson PM, Higginson IJ (2016). “Outcomes” Is Not an Oxymoron in Hospice/Palliative Care. J Palliat Med 19(11):1128–29. doi:10.1089/ jpm.2016.0427. Dalton E, Lannin NA, Laver K, Ross L, Ashford S, McCluskey A, Cusick A (2016). Validity, reliability and ease of use of the disabilities of arm, shoulder and hand questionnaire in adults following stroke. Disabil Rehabil 1–8. doi:10.1080/0 9638288.2016.1229364. Davidovich U, Jonas K, Catalan J, Cluver L, Harding R, Hedge B, Prince B, Rietmeijer K, Spire B, van den Boom F, Sherr L (2016). “We are our choices”-AIDS impact special issue Amsterdam 2015. AIDS care 28 Suppl 1:1–2. doi:10.1 080/09540121.2016.1153597. Davies JM, Gao W, Sleeman KE, Lindsey K, Murtagh FE, Teno JM, Deliens L, Wee B, Higginson IJ, Verne J (2016). Using routine data to improve palliative and end of life care. BMJ Support Palliat Care 6:257–62. doi:10.1136/ bmjspcare-2015-000994. Davison SN, Jhangri GS, Koffman J (2016). Knowledge of and attitudes towards palliative care and hospice services among patients with advanced chronic kidney disease. BMJ Support Palliat Care 6:66–74. doi:10.1136/ bmjspcare-2013-000610. Daveson BA, Smith M, Yi D, McCrone P, Grande G, Todd C, Gysels M, Costantini M, Murtagh FE, Higginson IJ, Evans CJ. (2016). The effectiveness and cost-effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers (Protocol). Cochrane Database of Systematic Reviews Issue 9 Art No: CD011619 doi:10.1002/14651858.cd011619. Daykin A, Selman LE, Cramer H, McCann S, Shorter GW, Sydes MR, Gamble C, Macefield R, Lane JA, Shaw A (2016). What are the roles and valued attributes of a Trial Steering Committee? Ethnographic study of eight clinical trials facing challenges. Trials 17:307.doi:10.1186/ s13063-016-1425-y.

D’Cruz K, Unsworth C, Roberts K, Morarty J, Turner-Stokes L, WellingtonBoyd A, Matchado J, Lannin N. Engaging patients with a moderate-severe acquired brain injury in goal setting: Perceptions of patients, families and healthcare workers. International Journal of Therapy and Rehabilitation. 2016; 23(1):2–13 de Brito M, Gomes B. The Clinical Academic Palliative Care Forum gives a boost to local research in northern Portugal. Eur J Palliat Care 2016;23(2):90–93. Downing J, Powell RA, Marston J, Huwa C, Chandra L, Garchakova A, Harding R (2016). Children’s palliative care in low- and middle-income countries. Arch Dis Child 101:85–90. doi:10.1136/ archdischild-2015-308307. Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, Higginson IJ, Daveson BA; BuildCARE (2016). Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review. BMC Medicine 14:38. doi:10.1186/s12916016-0582-x. Erez G, Selman L, Murtagh FE (2016). Measuring health-related quality of life in patients with conservatively managed stage 5 chronic kidney disease: limitations of the Medical Outcomes Study Short Form 36: SF-36. Quality of Life Research 25:2799–2809. doi:10.1007/ s11136-016-1313-7. Etkind SN, Bristowe K, Bailey K, Selman LE, Murtagh FE (2016). How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med 31(2):171–180. doi:10.1177/0269216316647610. Etkind SN, Koffman J (2016). Approaches to managing uncertainty in people with life-limiting conditions: role of communication and palliative care. Postgrad Med J 92:412–7. doi:10.1136/ postgradmedj-2015-133371. Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd CJ, Booth S (2016). The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised

controlled trial. Trials 17:185. doi:10.1186/s13063-016-1304-6. Gaertner J, Siemens W, Daveson BA, Smith M, Evans CJ, Higginson IJ, Becker G (2016). Of apples and oranges: Lessons learned from the preparation of research protocols for systematic reviews exploring the effectiveness of Specialist Palliative Care. BMC Palliat Care 15(1):43. doi:10.1186/s12904-016-0110-y. Ganca LL, Gwyther L, Harding R, Meiring M (2016). What are the communication skills and needs of doctors when communicating a poor prognosis to patients and their families? A qualitative study from South Africa. S Afr Med J 106(9):940–4. doi:10.7196/SAMJ.2016. v106i9.10568. Gao W, Verne J, Peacock J, Stiller C, Wells C, Greenough A, Higginson IJ (2016a). Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014. BMC Cancer (1):727. doi:10.1186/s12885-016-2695-1. Gao W, Crosby V, Wilcock A, Burman R, Silber E, Hepgul N, Chaudhuri KR, Higginson IJ (2016). Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions. PLoS One 11(10): e0165379. doi:10.1371/journal.pone.0165379. Guo P, Watts K, Wharrad H (2016). An integrative review of the impact of mobile technologies used by healthcare professionals to support education and practice. Nursing Open 3:66–78. doi:10.1002/nop2.37. Goodhead A, Speck P, Selman L (2016). ‘I think you just learnt as you went along’ – community clergy’s experiences of and attitudes towards caring for dying people: A pilot study. Palliat Med 30(7):674–83. doi:10.1177/0269216315625860. Gough N, Koffman J, Ross JR, Judson I (2016). Symptom burden in advanced Soft Tissue Sarcoma. J Pain Symptom Manage 53(3):588–597. doi:10.1016/j. jpainsymman.2016.10.357. Guo P, Harris R (2016). The effectiveness and experience of self-management following acute coronary syndrome: A review of the literature. Int J

Publications / 93

Nurs Stud 61:29–51. doi:10.1016/j. ijnurstu.2016.05.008. Gysels M, Reilly CC, Jolley CJ, Pannell C, Spoorendonk F, Moxham J, Bausewein C, Higginson IJ (2016). Dignity through integrated symptom management: lessons from the Breathlessness Support Service. J Pain Symptom Manage 52(4):515–524. doi:10.1016/j.jpainsymman.2016.04.010. Harding R (2016). Response to ‘Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries’. J Epidemiol Community Health 70:9 doi:10.1136/jech-2015-206362. Harding R, Claffey A, Brown, D (2016). Evaluation of a physiotherapy-led group rehabilitation intervention for adults living with HIV: referrals, adherence and outcome. Aids Care 28(12):1495–1505. doi: 10.1080/09540121.2016.1191611. Harding R, Defilippi K, Cameron D (2016a). What palliative care-related problems do patients with drug-resistant or drug-susceptible tuberculosis experience on admission to hospital? A cross-sectional self-report study. Palliat Med 30(9):862–8. doi:10.1177/0269216316637240. Harding R, Luyirika E, Sleeman KE (2016). Palliative care: when and how, and what are the implications for global cancer policy? Journal of Cancer Policy 10:16–20. doi:10.1016/j.jcpo.2016.05.004. Harding R, Maharaj S (2016). The needs, models of care, interventions and outcomes of palliative care in the Caribbean: a systematic review of the evidence. BMC Palliative Care 15:9. doi: 10.1186/s12904016-0079-6. Henson LA, Gomes B, Koffman J, Daveson BA, Higginson IJ, Gao W, BuildCARE (2016). Factors associated with aggressive end of life cancer care. Support Care Cancer 24(3):1079–89. doi:10.1007/s00520-015-2885-4. Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M, Gao W, BuildCARE (2016). “I’ll be in a safe place”: a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Supportive & Palliative Care 6:e01234. doi:10.1136/bmjopen-2016-012134.

Hepgul N, King S, Amarasinghe M, Breen G, Grant N, Grey N, Hotopf M, Moran P, Pariante CM, Tylee A, Wingrove J, Young AH, Cleare AJ (2016). Clinical characteristics of patients assessed within an Improving Access to Psychological Therapies (IAPT) service: results from a naturalistic cohort study (Predicting Outcome Following Psychological Therapy; PROMPT). BMC psychiatry 16:52. doi: 10.1186/ s12888-016-0736-6. Hepgul N, Pariante CM, Baraldi S, Bufalino C, Russell A, Agarwal K, Cleare AJ, Forton DM, Henderson M, Mondelli V, Ranjith G, Hotopf M (2016). Depression and anxiety in patients receiving interferonalpha: The role of illness perceptions. Journal of health psychology 1–10. doi:10.1177/1359105316658967. Higginson IJ (2016). Research challenges in palliative and end of life care. BMJ Support Palliat Care 6:2–4. doi:10.1136/ bmjspcare-2015-001091. Higginson IJ, Rumble C, Shipman C, Koffman J, Sleeman KE, Morgan M, Hopkins P, Noble J, Bernal W, Leonard S, Dampier O, Prentice W, Burman R, Costantini M (2016a). The value of uncertainty in critical illness? An ethnographic study of patterns and conflicts in care and decision-making trajectories. BMC Anesthesiology 16:11. doi:10.1186/s12871-016-0177-2. Jones S, Man WD-C, Gao W, Higginson IJ, Wilcock A, Maddocks M (2016). Neuromuscular electrical stimulation for muscle weakness in adults with advanced disease. Cochrane Database of Systematic Reviews Issue 10. Art. No.: CD009419. DOI: 10.1002/14651858.CD009419. pub3. Larkin PJ, Murtagh F, Richardson H, Langner MB, Payne S (2016). Collaboration: Securing a future for palliative care research. Palliat Med 30(8):709–10. doi:10.1177/0269216316661970. Lokker ME, Gwyther L, Riley JP, van Zuylen L, van der Heide A, Harding R (2016). The Prevalence and Associated Distress of Physical and Psychological Symptoms in Patients With Advanced Heart Failure Attending a South African Medical Center. J Cardiovasc Nurs 31(4):313–22. doi:10.1097/jcn.0000000000000256.

Lowther K, Harding R, Ahmed A, Gikaara N, Ali Z, Kariuki H, Sherr L, Simms V, Selman L (2016). Conducting experimental research in marginalised populations: clinical and methodological implications from a mixed-methods randomised controlled trial in Kenya. AIDS care 28 Suppl 1,60–3. doi:10.1080/0 9540121.2016.1146214. Maddocks M, Hopkinson J, Conibear J, Reeves A, Shaw C, Fearon KC (2016). Practical multimodal care for cancer cachexia. Curr Opin Support Palliat Care 10(4):298–305. doi:10.1097/ spc.0000000000000241. Maddocks M, Kerry R, Turner A, Howick J (2016). Problematic placebos in physical therapy trials. J Eval Clin Pract 22:598–602. doi:10.1111/jep.12582 Maddocks M, Kon SS, Canavan JL, Jones SE, Nolan CM, Labey A, Polkey MI, Man WD (2016b). Physical frailty and pulmonary rehabilitation in COPD: a prospective cohort study. Thorax 71:988–995. doi:10.1136/ thoraxjnl-2016-208460. Maddocks M, Nolan CM, Man WD, Polkey MI, Hart N, Gao W, Rafferty GF, Moxham J, Higginson IJ (2016a). Neuromuscular electrical stimulation to improve exercise capacity in patients with severe COPD: a randomised doubleblind, placebo-controlled trial. Lancet Respir Med 4:27–36. doi:10.1016/S22132600(15)00503-2. Magee C, Koffman J (2016). Out-of-hours palliative care: what are the educational needs and preferences of general practitioners? BMJ Support Palliat Care 6:362–8. doi:10.1136/ bmjspcare-2014-000764. Magee WL, Siegert RJ, Taylor SM, Daveson BA, Lenton-Smith G (2016). Music Therapy Assessment Tool for Awareness in Disorders of Consciousness (MATADOC): Reliability and Validity of a Measure to Assess Awareness in Patients with Disorders of Consciousness. J Music Ther 53(1):1–26. doi:10.1093/jmt/thv017. Maharaj S, Harding R (2016). The needs, models of care, interventions and outcomes of palliative care in the Caribbean: a systematic review of the evidence. BMC Palliat Care 15:9. doi:10.1186/s12904016-0079-6.

94 / Cicely Saunders Institute

Malcolm L, Mein G, Jones A, Talbot-Rice H, Maddocks M, Bristowe K (2016). Strength in numbers: patient experiences of group exercise within hospice palliative care. BMC Palliative Care 15:97. doi:10.1186/s12904-0160173-9. Martin NH, Lawrence V, Murray J, Janssen A, Higginson IJ, Lyall R, Burman R, Leigh PN, Al-Chalabi A, Goldstein LH (2016). Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis. Qual Health Res 26(10):1366– 1381. doi:10.1177/1049732315583661. Mason B, Nanton V, Epiphaniou E, Murray SA, Donaldson A, Shipman C, Daveson BA, Harding R, Higginson IJ, Munday D, Barclay S, Dale J, Kendall M, Worth A, Boyd K (2016). ‘My body’s falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ Support Palliat Care 6:60–5. doi:10.1136/ bmjspcare-2013-000639. Mather H (2016). A complicated case of metastatic thymoma. BMJ supportive & palliative care 6(1), 116-118. http://dx.doi.org/10.1136/ bmjspcare-2014-000743 McQuaid F, Pask S, Locock L, Davis E, Stevens Z, Plumb J, Snape MD (2016). Attitudes towards antenatal vaccination, Group B streptococcus and participation in clinical trials: Insights from focus groups and interviews of parents and healthcare professionals. Vaccine 34:4056–61. doi:10.1016/j.vaccine.2016.06.024. Morton RL, Webster AC, McGeechan K, Howard K, Murtagh FE, Gray NA, Kerr PG, Germain MJ, Snelling P (2016). Conservative Management and End of Life Care in an Australian Cohort with ESRD. Clin J Am Soc Nephrol 7;11(12):2195–2203. doi:10.2215/ cjn.11861115. Murtagh FE, Burns A, Moranne O, Morton RL, Naicker S (2016). Supportive Care: Comprehensive Conservative Care in End-Stage Kidney Disease. Clin J Am Soc Nephrol 7;11(10):1909–1914. doi:10.2215/cjn.04840516. Nayar M, Bhatti F, Williams H, Pick A, Turner-Stokes L (2016). To quantify and describe medical resource requirements in a prolonged disorders of consciousness

(PDOC) sub-group in a tertiary hyperacute rehabilitation service in the UK. Brain Injury 30(5–6):797–98. Nayar M, Vanderstay R, Siegert RJ, Turner-Stokes L (2016). The UK Functional Assessment Measure (UK FIM+FAM): Psychometric Evaluation in Patients Undergoing Specialist Rehabilitation following a Stroke from the National UK Clinical Dataset. PLoS One 11(1):e0147288. doi:10.1371/journal. pone.0147288. O’Sullivan EM, Higginson IJ (2016). ‘I’ll continue as long as I can, and die when I can’t help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ Support Palliat Care 6:43– 51. doi:10.1136/bmjspcare-2014-000664. Perera G, Stewart R, Higginson IJ, Sleeman KE (2016). Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study. Age Ageing 45:667–672. doi:10.1093/ ageing/afw077. Pike S, Lannin NA, Cusick A, Wales K, Turner-Stokes L, Ashford S. A systematic review protocol to evaluate the psychometric properties of measures of function within adult neuro-rehabilitation. Systematic Reviews 2015 Jun 13;4:86. doi: 10.1186/s13643-015-0076-5. Pivodic L, Harding R, Calanzani N, McCrone P, Hall S, Deliens L, Higginson IJ, Gomes B; EURO IMPACT (2016). Home care by general practitioners for cancer patients in the last 3 months of life: An epidemiological study of quality and associated factors. Palliat Med 30(1):64–74. doi:10.1177/0269216315589213. Ramsenthaler C, Kane P, Gao W, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ (2016a). Prevalence of symptoms in patients with multiple myeloma: a systematic review and meta-analysis. Eur J Haematol 97:416–29. doi:10.1111/ejh.12790. Ramsenthaler C, Osborne TR, Gao W, Siegert RJ, Edmonds PM, Schey SA, Higginson IJ (2016). The impact of disease-related symptoms and palliative care concerns on health-related quality of life in multiple myeloma: a multi-centre study. BMC Cancer 16:427. doi:10.1186/ s12885-016-2410-2.

Reilly CC, Bausewein C, Pannell C, Moxham J, Jolley CJ, Higginson IJ (2016a). Patients’ experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey. Palliat Med 30(3):313–22. doi:10.1177/0269216315600103. Reilly CC, Jolley CJ, Elston C, Moxham J, Rafferty GF (2016). Blunted perception of neural respiratory drive and breathlessness in patients with cystic fibrosis. ERJ Open Research 2:00057–2015. doi:10.1183/23120541.00057-2015. Sarmento VP, Higginson IJ, Ferreira PL, Gomes B (2016). Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world. Palliat Med 30(4):363–73. doi:10.1177/0269216315594974. Schildmann EK, Groeneveld EI, Denzel J, Brown A, Bernhardt F, Bailey K, Guo P, Ramsenthaler C, Lovell N, Higginson IJ, Bausewein C, Murtagh FE (2016). Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale. Palliat Med 30(6):599–610. doi:10.1177/0269216315608348. Selman L, Robinson V, Klass L, Khan S, George R, Shepherd K, Burman R, Koffman J (2016). Improving confidence and competence of healthcare professionals in end-of-life care: an evaluation of the ‘Transforming End of Life Care’ course at an acute hospital trust. BMJ Support Palliat Care 6: 231–236. doi:10.1136/ bmjspcare-2015-000879. Sexton DJ, Lowney AC, O’seaghdha CM, Murphy M, O’brien T, Casserly LF, McQuillan R, Plant WD, Eustace JA, Kinsella SM, Conlon PJ (2016). Do patient‐reported measures of symptoms and health status predict mortality in hemodialysis? An assessment of POS‐S Renal and EQ‐5D. Hemodialysis International 20(4):618-30.

Publications / 95

Simon ST, Higginson IJ, Booth S, Harding R, Bausewein C (2016a). Benzodiazepines for the relief of breathlessness in advanced malignant and non-malignant diseases in adults. Cochrane database of systematic reviews. doi: 10.1002/14651858.CD007354.pub3.

limb spasticity management including botulinum toxin A on patient-centred goal attainment: rationale and protocol for an international prospective, longitudinal cohort study (ULIS-III). BMJ open 6(6):e011157. doi:10.1136/ bmjopen-2016-011157.

Simon ST, Weingartner V, Higginson IJ, Benalia H, Gysels M, Murtagh FE, Spicer J, Linde P, Voltz R, Bausewein C (2016). “I Can Breathe Again!” Patients’ Self-Management Strategies for Episodic Breathlessness in Advanced Disease, Derived From Qualitative Interviews. J Pain Symptom Manage 52(2):228–34. doi:10.1016/j.jpainsymman.2016.02.016.

Turner-Stokes L, Bavikatte G, Williams H, Bill A, Sephton K (2016b). Cost-efficiency of specialist hyperacute in-patient rehabilitation services for medically unstable patients with complex rehabilitation needs: a prospective cohort analysis. BMJ Open 6:e012112. doi:10.1136/ bmjopen-2016-012112.

Singh R, Sinha S, Bill A, Turner-Stokes L (2016). Unmet need for specialised rehabilitation following neurosurgery: can we maximise the potential cost–benefits? Brit J Neurosurg; Oct 19. 31(2):249–253. doi: 10.1080/02688697.2016.1233318.

Turner-Stokes L, Bill A, Williams H, Sephton K (2016). Estimated life time savings from specialist rehabilitation following acquired brain injury: a large multi-centre cohort analysis from the UK. Brain Injury 30(5–6):744–45.

Sleeman KE, Davies JM, Verne J, Gao W, Higginson IJ (2016a). The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012. Palliat Med 30(1):45–53. doi:10.1177/0269216315585064.

Turner-Stokes L, Pick A, Nair A, Disler PB, Wade DT. Multi-disciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database Syst Rev. 2015 Dec 22;12:CD004170. doi: 10.1002/14651858.CD004170.pub3. Review. PMID: 26694853.

Sleeman KE, Higginson IJ (2016). Evidence-based policy in palliative care: time to learn from our mistakes. BMJ Support Palliat Care 6:417. doi:10.1136/ bmjspcare-2016-001250.

Turner-Stokes L, Williams H, Bill A, Bassett P, Sephton K (2016c). Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: a multicentre cohort analysis of a national clinical data set. BMJ open 6:e010238. doi: 10.1136/bmjopen-2015-010238.

Smith C, Bosanquet N, Riley J, Koffman J (2016). Loss, transition and trust: perspectives of terminally ill patients and their oncologists when transferring care from the hospital into the community at the end of life. BMJ Support Palliat Care doi:10.1136/bmjspcare-2015-001075. Soares DD, Nunes CM, Gomes B (2016). Effectiveness of Emergency Department Based Palliative Care for Adults with Advanced Disease: A Systematic Review. J Palliat Med 19(6):601–9. doi:10.1089/ jpm.2015.0369. Turner K, Tookman A, Bristowe K, Maddocks M (2016). ‘I am actually doing something to keep well. That feels really good’: Experiences of exercise within hospice care. Prog Palliat Care 24(4):204– 12. doi:10.1080/09699260.2015.1123441. Turner-Stokes L, Ashford S, Jacinto J, Maisonobe P, Balcaitiene J, Fheodoroff K (2016a). Impact of integrated upper

van Vliet LM, Gao W, DiFrancesco D, Crosby V, Wilcock A, Byrne A, AlChalabi A, Chaudhuri KR, Evans C, Silber E, Young C, Malik F, Quibell R, Higginson IJ; OPTCARE Neuro (2016). How integrated are neurology and palliative care services? Results of a multicentre mapping exercise. BMC neurology 16:63. doi:10.1186/ s12883-016-0583-6.

Publications in peer review journals 2017 Ang K, Hepgul N, Gao W, Higginson IJ (2017). Strategies used in improving and assessing the level of reporting of implementation fidelity in randomised controlled trials of palliative care complex

interventions: A systematic review. Palliat Med. doi: 10.1177/0269216317717369. [Epub ahead of print]. Ang K, Maddocks M, Xu H, Higginson IJ (2017). The Effectiveness of Singing or Playing a Wind Instrument in Improving Respiratory Function in Patients with Long-Term Neurological Conditions: A Systematic Review. J Music Ther 54(1):108–31. doi:10.1093/jmt/thx001. Ashford S, Jackson D, Mahaffey P, Vanderstay R, Turner-Stokes L (2017). Conceptualization and Development of the Leg Activity Measure (LegA) for Patient and Carer Reported Assessment of Activity in the Paretic Leg. Physiother Res Int 22(2). doi:10.1002/pri.1660. Bayly J, Wilcock A, Higginson I, Maddocks M (2017). Early Engagement in Physical Activity and Exercise Is Key in Managing Cancer Cachexia. Oncology (Williston Park, NY) 31(1):38–9. Berry M, Brink E, Harris J, Sleeman KE (2017). Supporting relatives and carers at the end of a patient’s life. BMJ 356:j367. doi:10.1136/bmj.j367. Bone AE, Hepgul N, Kon S, Maddocks M (2017). Sarcopenia and frailty in chronic respiratory disease: Lessons from gerontology. Chron Respir Dis 14(1):85–99. doi:10.1177/1479972316679664. Brighton LJ, Koffman J, Hawkins A, McDonald C, O’Brien S, Robinson V, Khan SA, George R, Higginson IJ, Selman LE (2017). A systematic review of end of life care communication skills training for generalist palliative care providers: research quality and reporting guidance. Journal of Pain and Symptom Management. http://dx.doi.org/10.1016/j. jpainsymman.2017.04.008. [E-pub ahead of print]. Brighton LJ, Koffman J, Hawkins A, McDonald C, O’Brien S, Robinson V, Khan SA, George R, Higginson IJ, Selman LE (2017). The effect of communication skills training for generalist palliative care providers on patient-reported outcomes and clinician behaviours: a systematic review and metaanalysis. Journal of Pain and Symptom Management. http://dx.doi.org/10.1016/j. jpainsymman.2017.04.007. [E-pub ahead of print].

96 / Cicely Saunders Institute

Brighton LJ, Koffman J, Robinson V, Khan SA, George R, Burman R, Selman LE (2017). ‘End of life could be on any ward really’: A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences. Palliat Med 1–11. doi:10.1177/0269216316679929. Bristowe K, Carey I, Hopper A, Shouls S, Prentice W, Higginson IJ, Koffman J (2017). Seeing is believing – healthcare professionals’ perceptions of a complex intervention to improve care towards the end of life: A qualitative interview study. Palliat Med 1–8. doi: 10.1177/0269216317711336. Bristowe K, Hodson M, Wee B, Almack K, Johnson K, Daveson BA, Koffman J, McEnhill L, Harding R (2017a). Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med 1–13. doi: 10.1177/0269216317705102. Davies JM, Osborne TR, Edmonds PM, Schey SA, Devereux S, Higginson IJ, Ramsenthaler C (2017). The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma. Eur J Haematol 98:508–516. doi: 10.1111/ejh.12864. Dzingina MD, McCrone P, Higginson IJ (2017b). Does the EQ5D capture the concerns measured by the Palliative care Outcome Scale? Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods. Palliat Med 1–10. doi: 10.1177/0269216317705608. Dzingina MD, Reilly CC, Bausewein C, Jolley CJ, Moxham J, McCrone P, Higginson IJ, Yi D (2017a). Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis. Palliat Med 31(4):369–377. doi:10.1177/0269216317690994. Ekström M, Bajwah S, Bland JM, Currow DC, Hussain J, Johnson MJ (2017a). One evidence base; three stories: do opioids relieve chronic breathlessness? Thorax 0:0. doi:10.1136/thoraxjnl-2016-209868. Ekström M, Bajwah S, Johnson MJ (2017). Incident opioid drug use and adverse respiratory outcomes among older

adults with COPD. Eur Respir J 8:49(3) doi:10.1183/13993003.02311-2016. Ellis-Smith C, Evans CJ, Murtagh FE, Henson LA, Firth AM, Higginson IJ, Daveson BA, BuildCARE (2017). Development of caregiver-reported measure to support systematic assessment of people with dementia in long-term care: The Integrated Palliative care Outcomes Scale for Dementia. Palliat Med 31(7):651–660. doi:10.1177/0269216316675096. Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, Murtagh FEM (2017). How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med 15:102. doi:10.1186/ s12916-017-0860-2. Gomes B, de Brito M, Sarmento P V, Yi D, Soares D, Fernandes J, Fonseca B, Gonçalves E, Ferreira PL, Higginson IJ (2017). Valuing attributes of home palliative care with service users: a pilot discrete choice experiment. J Pain Symptom Manage 07(8). doi: 10.1016/j. jpainsymman.2017.05.005. Groenvold M, Petersen MA, Damkier A, Neergaard MA, Nielsen JB, Pedersen L, Sjøgren P, Strömgren AS, Vejlgaard TB, Gluud C, Lindschou J, Fayers P, Higginson IJ, Johnsen AT (2017). Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial. Palliat Med 1–11. doi: 10.1177/0269216317705100. Harding R, Wolfe J, Baker JN (2017). Outcome Measurement for Children and Young People. J Palliat Med 20(4):313. doi:10.1089/jpm.2016.0525. Harding R, Hopkins P, Metaxa V, Higginson IJ (2017). Do we have adequate tools and skills to manage uncertainty among patients and families in ICU? Intensive Care Med 43(3):463–464. doi:10.1007/ s00134-016-4630-y. Harding R, Namisango E, Radbruch L, Katabira ET (2017). How to Establish Successful Research Partnerships in Global Health Palliative Care. J Pain Symptom Manage 53(2):e3-e4. doi:10.1016/j.jpainsymman.2016.10.355.

Henson LA, Higginson IJ, Gao W; (2017). What factors influence emergency department visits by patients with cancer at the end of life? Analysis of a 124,030 patient cohort. Palliative Medicine. DOI: https://doi. org/10.1177/0269216317713428. Hepgul N, Gao W, Evans CJ, Jackson D, van Vliet LM, Byrne A, Crosby V, Groves KE, Lindsay F, Higginson IJ (2017). Integrating palliative care into neurology services: what do the professionals say?. BMJ Supportive & Palliative Care. doi: 10.1136/bmjspcare-2017-001354. [E-pub ahead of print]. Higginson IJ, Reilly CC, Bajwah S, Maddocks M, Costantini M, Gao W; GUIDE_Care project (2017). Which patients with advanced respiratory disease die in hospital? A 14-year populationbased study of trends and associated factors. BMC Med 15:19. doi:10.1186/ s12916-016-0776-2. Hunt J, Bristowe K, Chidyamatare S, Harding R (2017). ‘They will be afraid to touch you’: LGBTI people and sex workers’ experiences of accessing healthcare in Zimbabwe – an in-depth qualitative study. BMJ Global Health 2:e000168. doi:10.1136/ bmjgh-2016-000168. Kane PM, Murtagh FE, Ryan KR, Brice M, Mahon NG, McAdam B, McQuillan R, O’Gara G, Raleigh C, Tracey C, Howley C, Higginson IJ, Daveson BA; BuildCARE (2017). Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study. Palliat Med 1–8. doi:10.1177/0269216317706426. Liu W, Guo P (2017). Exploring the challenges of implementing palliative care in China. European Journal of Palliative Care 24(1):12-17. Lovell N, Jones C, Baynes D, Dinning S, Vinen K, Murtagh F (2017). Understanding patterns and factors associated with place of death in patients with end-stage kidney disease: A retrospective cohort study. Palliat Med 31(3): 283–288. doi:10.1177/0269216316655747. Maddocks M, Delogu V, Jones SE, Polkey MI, Man WD (2017). Exercise

Publications / 97

Training Versus Neuromuscular Stimulation in Severe chronic obstructive pulmonary disease. Arch Bronconeumol 53(7):357–359 doi:10.1016/j.arbres.2016.11.022. Maddocks M, Granger C (2017). Lower limb muscle function and exercise performance in lung cancer. Respirology 22:1053-1054. doi:10.1111/resp.13060. Mather H, Guo P, Firth A, Davies JM, Sykes N, Landon A, Murtagh FE (2017). Phase of Illness in palliative care: Cross-sectional analysis of clinical data from community, hospital and hospice patients. Palliat Med 16(8): https://doi. org/10.1177/0269216317727157. McLean S, Gomes B, Higginson IJ (2017). The intensity of caregiving is a more important predictor of adverse bereavement outcomes for adult-child than spousal caregivers of patients who die of cancer. Psychooncology 26(3):316–322. doi:10.1002/pon.4132. May P, Morrison RS, Murtagh FE (2017). Current state of the economics of palliative and end-of-life care: A clinical view. Palliat Med 31(4):293–95. doi:10.1177/0269216317695680. Murton AJ, Maddocks M, Stephens FB, Marimuthu K, England R, Wilcock A (2017). Consequences of Late-Stage Non-Small-Cell Lung Cancer Cachexia on Muscle Metabolic Processes. Clinical Lung Cancer 18(1):e1-e11. doi:10.1016/j. cllc.2016.06.003. Nolan CM, Kon SSC, Patel S, Jones SE, Barker RE, Polkey MI, Maddocks M, Man WD (2017). Gait speed and pedestrian crossings in COPD. Thorax 0-0. doi:10.1136/thoraxjnl-2017-210173. Nolan CM, Maddocks M, Canavan JL, Jones SE, Delogu V, Kaliaraju D, Banya W, Kon SSC, Polkey MI, Man WD (2017). Pedometer Step Count Targets During Pulmonary Rehabilitation in COPD: A Randomized Controlled Trial. Am J Respir Crit Care Med 15;195(10):1344–1352. doi:10.1164/ rccm.201607-1372OC. O’Sullivan G, Harding R (2017). Transition: the experiences of support workers caring for people with learning disabilities towards the end of life. BMJ Support Palliat Care 7:158–163 doi:10.1136/bmjspcare-2014-000771.

Pearson C, Verne J, Wells C, Polato GM, Higginson IJ, Gao W (2017). Measuring geographical accessibility to palliative and end of life (PEoLC) related facilities: a comparative study in an area with welldeveloped specialist palliative care (SPC) provision. BMC Palliative Care 16:14. doi:10.1186/s12904-017-0185-0. Powell RA, Ali Z, Luyirika E, Harding R, Radbruch L, Mwangi-Powell FN (2017). Out of the shadows: non-communicable diseases and palliative care in Africa. BMJ Support Palliat Care 7:128–132. doi:10.1136/ bmjspcare-2014-000751. Reigada C, Papadopoulos A, Boland JW, Yorke J, Ross J, Currow DC, Hart S, Bajwah S, Grande G, Wells A, Johnson MJ (2017). Implementation of the Needs Assessment Tool for patients with interstitial lung disease (NAT:ILD): facilitators and barriers. Thorax 0-0. doi:10.1136/thoraxjnl-2016-209768. Ramsenthaler C, Gao W, Siegert RJ, Schey SA, Edmonds PM, Higginson IJ (2017). Longitudinal validity and reliability of the Myeloma Patient Outcome Scale (MyPOS) was established using traditional, generalizability and Rasch psychometric methods. Quality of Life Research 1-7. DOI: 10.1007/s11136017-1660-z. Sarmento VP, Gysels M, Higginson IJ, Gomes B (2017). Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Supportive & Palliative Care. doi: 10.1136/ bmjspcare-2016-001141. [E-pub ahead of print]. Selman LE, Brighton LJ, Robinson V, George R, Khan SA, Burman R, Koffman J (2017). Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK. BMC Palliat Care 16:17. doi:10.1186/s12904017-0191-2. Selman LD, Daveson BA, Smith M, Johnston B, Ryan K, Morrison RS, Pannell C, McQuillan R, de WolfLinder S, Pantilat SZ, Klass L, Meier, DE, Normand C & Higginson IJ (2017a). How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the

USA. Age Ageing; 46 (2): 300–309. doi: 10.1093/ageing/afw193. Sleeman KE, Koffman J, Higginson IJ (2017). Leaky pipeline, gender bias, self-selection or all three? A quantitative analysis of gender balance at an international palliative care research conference. BMJ Support Palliat Care 0:1–3. doi:10.1136/ bmjspcare-2016-001211. Sleeman KE, Perera G, Stewart R, Higginson IJ (2017). Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data. Alzheimer’s and Dementia. doi: http://dx.doi.org/10.1016/j. jalz.2017.06.2267. St John K, Koffman J (2017). Introducing Namaste Care to the hospital environment: a pilot study. Annals of Palliative Medicine 6(4):354-64. Tavares AP, Paparelli C, Kishimoto CS, Cortizo SA, Ebina K, Braz MS, Mazutti SR, Arruda MJ, Antunes B (2017). Implementing a patientcentred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study. Palliat Med 31(3):275–282. doi:10.1177/0269216316655349. Turner-Stokes L (2017). A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness. Journal of Medical Ethics 43:469–475. doi:10.1136/medethics-2016-104057. Information about books, book chapters, published abstracts and letters can be found at our website: www.kcl.ac.uk/ nursing/department/cicelysaunders/index

MSc dissertations 2015–2017 MSc alumni 2015 and their research dissertations Lea Cramsie Analysis of place of death for nursing home patients who died in care homes in Greater Glasgow and Clyde with comparison across three models of nursing and provisions.

98 / Cicely Saunders Institute

Isabel Dietz Patients’ perception of errors in palliative care – a qualitative interview study. Gilli Erez Quality of life with stage 5 chronic kidney disease a secondary data analysis. Rita Faria Dias Canario NEON study: perspectives of Portuguese oncologists about complex palliative needs in canceran explorative qualitative study. Lucy Fettes Effectiveness Of Interdisciplinary Approaches To Chronic Pain: Applications To Chronic Pain In Cancer And Palliative Care (Recipient of the Dame Cicely Saunders Prize in Academic Excellence, Recipient of the Samuel Sebba Charitable Trust scholarship). Deirdre Hawkins Relatives Perspective on End of Life Care of People with Dementia. Jane Hegarty Survey examining UK oncology trainees’ attitudes, current training and knowledge base of cancerrelated pain management (Recipient of the Samuel Sebba Charitable Trust scholarship). Sarah McLean Bereavement outcomes of family caregivers of patients who have died of cancer: do spousal and adultchild caregivers experience bereavement differently, and what factors affect this? Secondary analysis of data from the Qualycare Study. Sandhya Maharaj Systematic Review on needs, models, outcomes, interventions in of palliative care in Caribbean. Shabnam Nawaz Spiritual assessment tools in palliative care: a systematic review. Kimberley St John Appropriateness of Namaste Care for people with dementia in hospital. Natalia Salamanca Systematic Review on interventions to promote hope in palliative care patients.

Jia-En Tan The role and meaning of hope from palliative care patients: systematic review. Wai Yee Chee A systematic review of the use of aromatherapy in palliative care settings.

MSc alumni 2016 and their research dissertations Kexin Ang Strategies used in improving implementation fidelity in RCTS of palliative care complex interventions: a systematic review. Pansemni Aristodemou Palliative Care Services in Cyprus. A population-based needs assessment. What there is today and what can be done for the future. Laura Bernstein The Prevalence of Symptoms in Adults with Acute Myeloid Leukemia. Susanne De Wolf Patient and public involvement in palliative care research: A qualitative study to identify motivators and meaningful outcomes.

Natalie Magaya-Kalbermatten Non-medical factors influencing the decision making process for systemic anticancer treatment in patients with advanced cancer- a systematic literature review. Valerie O’Reilly Factors influencing acute care utilisation in nursing home residents with advanced dementia in the final three months of life – A systematic review and narrative synthesis. [Recipient of the Dame Cicely Saunders Prize in Academic Excellence] Panate Pukrittayakamee Psychometric properties of the Thai version of the Palliative Outcome Scale version 2. (Thai POS) and factors associated with patient-staff agreement on ratings. Nicola Sexton Advance care Planning in Adolescents and Young adults. A systematic review and narrative synthesis. Bee Sim Chan A retrospective study to test some aspects of validity and reliability of Integrated palliative care Outcome Scale (IPOS) staff version in an inpatient hospice in Singapore.

Rosalind Gill The experiences of patients diagnosed with COPD and their families of Advance Care planning and the perception of those who care.

Pia Cristina Zimmermann Perspectives – The perspectives of who people who die in Claraspital and their unmet needs at the end of life. A retrospective postal survey of bereaved family members of close friends.

Angela Halley Does ethnicity make a difference in understanding of palliative care and involvement tin decision making for people affected by severe Multiple Sclerosis? A secondary analysis of a cross sectional study.

MSc alumni 2017 and their research dissertations

Aoife Lowney Trajectories of decline and symptoms prior to death in patients with end-stage kidney disease on haemodialysis, a longitudinal study. Jens Madsen National Survey of the Current Provision of palliative Care Services for patients with End Stage Renal failure (ESRF) in Denmark.

Duarte Soares Systematic review on effectiveness of emergency departmentbased palliative care and case report of an abandoned original study due to delays and research ethics issues.

Harriet Mather Phase of Illness in Palliative Care: Towards a Common Understanding. An analysis of the clinical characteristics of the differenphases of illness in patients within three UK-based palliative care organisations.

Cathriona Sullivan Study of experience of Professional Interpreters when Breaking Bad News to patients or their representatives/families/carers in palliative care setting.

Caitriona Mcloughlin Investigations and Therapeutic Interventions in a Specialist Palliative Care Unity: A Retrospective Cohort Study.

Claudia Acevedo Effectiveness of non-pharmacological interventions to prevent and treat delirium advanced cancer patients: A systematic review of the literature Kate Binnie How does yoga affect “total pain” for patients in supportive and palliative care settings? Experiences, outcomes and a theory of change A Narrative synthesis of the literature (Recipient of the Samuel Sebba Charitable Trust scholarship ) Huyen Bui Evaluating quality of life of adult HIV and advanced cancer patients in Vietnam: a secondary data analysis Steven Callaghan A systematic review exploring the effectiveness of Electro chemotherapy in managing pain associated with Cutaneous and Subcutaneous skin

Publications / 99

tumours. (Recipient of the Samuel Sebba Charitable Trust scholarship). Katie Cauldwell Factors associated with end of life discussions with carers and adults ages 75 years or older: a populationbased mortality follow-back survey. Susan Cullum Rehabilitative Palliative Care A Challenge on the Hospice Inpatient unit? Sheilesh Dewan The prevalence and burden of physical and psychological symptoms among NYHA stage III/ IV heart failure patients attending a public hospital in urban South Africa: findings from secondary data analysed of a prospective longitudinal observational study (Recipient of the Sir Halley Stewart trust scholarship). Maja Furlan De Brito The landscape of home-based palliative care: Secondary analysis of qualitative data on family carers’ experiences (Recipient of the Dame Cicely Saunders Prize in Academic Excellence). Alice Gray A Systematic Review and Critical Discourse Analysis (CDA) of the reporting of ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) in broadsheet and tabloid UK national newspapers. Emma Howarth A systematic review of the measurement properties of patient centred outcome measures used in advanced heart failure. Doug Le Symptom prevalence and burden in two populations of HIV/AIDS patients and cancer patients from four hospitals of Vietnam: A secondary data analysis from vietpos validation study. Susana Mata Kleiman Challenges and limitations that general practitioners face when providing palliative care: a systematic review. Claire Macdermott Validity and Reliability of the Integrated Patient Outcome Scale-Renal (IPOS-Renal): A pilot and feasibility study. Diogo Martins-Branco Relationship between palliative care availability and aggressiveness of care at the end of life for adult cancer patients dying in in public hospitals: a national retrospective cohort study.

Fay Murray-Brown The attitudes of general practitioners with regards to the inclusion of patients with dementia on general practice palliative care registers: a postal survey. Cui Fang Neo Activities of Daily Living Disability in Adults living with cancer: A systematic review. Ruth O’Connell A synthesis of qualitative research on the training needs of staff supporting adults with a learning disability at the end of life: A meta-ethnography approach. Mieu Gin Chan Self-management programmes for patients receiving dialysis treatment: A systematic review of selfmanagement models, content and impact on quality of life. Anoosha Patel A survey of resilience and burnout among palliative medicine registrars. Catarina Ribeiro Carrasco Feasibility of home vs. hospital based resistance training for advanced cancer patients: a phase II trial. Caroline Quilty What psychosocial support can healthcare professionals provide to patients who experience weight loss due to cancer cachexia? A qualitative study of the experience of weight loss in patients with advanced cancer (Recipient of the Rob Buckman scholarship). Catarina Ribeiro Feasibility of home vs. hospital based resistance training for advanced cancer patients: a phase II trial Barbara Sheehy-Skeffington What are the barriers and facilitators to introducing the practice of family caregivers administering subcutaneous medications for symptom control to palliative care patients dying at home? A mixed methods study. Aida Shoush A survey of how financial and social welfare advice and advocacy for patients and families are addressed in independent specialist palliative care settings in England. Steffy Steffy The Impacts of Advance Care Planning: A Systematic Review. Philipp Von Trott Zu Solz Acupuncture for breathlessness in advanced disease A systematic review and meta-analysis (Recipient of the William Higginson Prize for Epidemiology in Palliative Care).

100 / Cicely Saunders

Staff

Academic

Professor Irene J Higginson Director of the Cicely Saunders Institute, Professor of Palliative Care & Policy, Honorary Consultant in Palliative Medicine I am passionate about evidence based practice in palliative care so we can improve care in the future. I am chief or senior investigator of several major research studies focused on trialling new services and treatments, evaluating care and measuring outcomes. I teach students, supervise PhDs, am Scientific Director of Cicely Saunders International, contribute to clinical services and am an advisor to many bodies.

Professor Richard Harding

Professor Charles Normand

Professor Lynne Turner-Stokes

Herbert Dunhill Chair & Director of the Centre for Global Health Palliative Care

Professor of the Economics of Palliative Care & Rehabilitation

Director, Regional Hyper-acute Rehabilitation Unit (RHRU)/ Northwick Park Professor of Rehabilitation Medicine

The work I lead in the Institute reflects my view that one of the best tools for advocacy is evidence. To ensure that we achieve the goal of appropriate and effective palliative care for all, we must deliver ground-breaking, robust and relevant research, but also partner with stakeholders to ensure evidence impacts on practice. I see the Institute as a major player in capacity building in the world. This for me is the priority task, the major source of motivation for my daily work, and the provider of continual reward.

I am an economist who works mainly in palliative care and the effects of population ageing on health care needs and provision. I joined the Cicely Saunders Institute in 2017 and also hold a part-time post at Trinity College Dublin. I am CoPrincipal Investigator on the Irish Longitudinal Study on Ageing and a Senior Investigator at the All Ireland Institute of Hospice and Palliative Care. My particular interests are measuring outcomes and benefits, and the effects of palliative care on costs.

I have a special interest in prolonged disorders of consciousness and as Director of the RHRU lead a clinical team of over 100 staff to care for patients with complex neurological disabilities following major illness or injury. My academic work centres on clinical outcomes, commissioning and policy development for specialist rehabilitation and my achievements include founding the UK Rehabilitation Outcomes Collaborative (UKROC).

Dr Sabrina Bajwah Senior Lecturer and Honorary Consultant My role involves both clinical and research work. I work clinically across KHP specialising in respiratory palliative care, including running an Interstitial Lung Disease (ILD) palliative care clinic at Guy’s Hospital. My research work focuses on respiratory palliative care and evaluating models of care, areas that I am particularly passionate about. I am currently Chief Investigator on two NIHR funded systematic reviews: “Interventions to improve symptoms and quality of life in ILD” and “Evaluating the effectiveness and cost-effectiveness of inpatient palliative care”.

Staff / 101

Dr Catherine Evans

Dr Wei Gao

Dr Jonathan Koffman

Dr Matthew Maddocks

HEE/NIHR Senior Clinical Lecturer in Palliative Care and Nursing Research, Development and Innovation Director, and Honorary Nurse Consultant Sussex Community NHS Foundation Trust

Reader in Statistics & Epidemiology

Reader in Palliative Care

Lecturer in Health Services Research

I am a medically trained statistician and epidemiologist. My research focuses on routine data based care improvement and the evaluation of complex interventions. I manage and provide statistical leadership to projects. In the Institute I am a post-graduate research coordinator, promote best practice in research, provide analytical intelligence to support strategic development and lead the quality assessment of research outputs. I am deputy lead of the Palliative and End of Life Care Theme, CLAHRC South London.

My responsibilities include being Course Director for the multiprofessional MSc in Palliative Care run by the Institute. I am passionate about teaching and I am delighted when students grasp complex concepts and then undertake research that addresses important palliative care questions. My research interests include developing and evaluating complex interventions in palliative and end of life care, clinical trials, and the experience of death and dying among black, Asian and minority ethnic communities, as well as other underserved population groups.

My work aims to optimise palliative care services and outcomes for older people with frailty and multimorbidity in community settings. I am interested in developing and evaluating ‘new’ models of care including short-term integrated palliative and supportive care (SIPScare); and symptom and psychological assessment and communication evaluation (SPACEtoolkit) to manage uncertain recovery in community hospitals. I lead on patient and public involvement, and the European Palliative Care Academy (EUPCA) leadership training.

Dr Katherine Sleeman NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine I am an NIHR funded Clinician Scientist, which means that most of my week is spent on academic work at the Cicely Saunders Institute, with around one day per week spent working clinically as a palliative care consultant. Academically, I am interested in how we can better use routinely collected data to understand and improve end of life care, especially for people with dementia. I am also very involved in public and policy engagement to enhance the impact of our work, for example through my work with the End of Life Care Coalition, and I regularly blog and tweet about research in palliative care.

Researchers Post-Doctoral Researchers

My research focuses on developing and evaluating rehabilitation strategies for people with advanced disease. Many of my studies are at the interface between palliative care and rehabilitation. My work seeks to identify what matters most to people and help them to achieve it. I am also a post-graduate research coordinator for the Institute, and in this role I support our students from enrolment to completion of their PhD. I especially enjoy working with clinical staff in hospice settings, who are often keen to contribute to research, and use research findings to improve the services they offer to the public.

Dr Stephen Ashford Honorary Clinical Lecturer and Consultant Physiotherapist I have a combined research and clinical role across neurological rehabilitation and palliative care. I work clinically at the Regional Hyper-acute Rehabilitation Unit, London North West Healthcare NHS-Trust, to provide a specialised rehabilitation service to those with complex brain injury. I support clinical colleagues in contributing to, and developing, research projects and have a particular interest in management of symptoms (particularly spasticity), complex disability management, rehabilitation interventions and goal setting across palliative care and neuro-rehabilitation practice.

102 / Cicely Saunders

Dr Katherine Bristowe

Dr Emeka Chukwusa

Dr Barbara Gomes

Dr Ping Guo

Research Fellow

Research Associate, Guide_Care Services

Research Fellow

Project Manager and Research Associate

As a Research Fellow here at the Cicely Saunders Institute, my role involves undertaking and leading on research projects; my primary research interests are widening access to palliative care and improving health communication. I am an expert in qualitative methods and provide guidance and oversight for qualitative components of studies across our four streams of research within the Institute, as well as teaching regularly on qualitative methods. I am co-lead for the psychosocial modules of our MSc in palliative care, overseeing the successful delivery of these each year. I am also a supervisor to PhD and Masters students.

As a Research Associate for the Guide_Care services project, my role involves conducting research to enhance our understanding of the role of health service factors (e.g. service provision, capacity, utilisation and needs, proximity, and workforce etc.) on place of death. I am also involved in project management, data sourcing and management, GIS mapping and analysis, and the dissemination of project findings through progress reports, newsletters and articles. I am glad that I can contribute and make a difference to palliative care through research.

I am a researcher with expertise in proofing end-of-life care to ensure it meets people’s hopes. My focus is on the preferences, factors and outcomes associated with dying at home for patients and their families. With over 50 papers published, my findings have informed health policy and triggered strategic planning, service developments and dialogue with the public and the media about palliative care in Europe and beyond. I lead a Cochrane review on the effectiveness and cost-effectiveness of home-based palliative care and a project (DINAMO) to train early researchers and develop an optimised model of home-based palliative care in Portugal.

Dr Nilay Hepgul

Dr Kennedy Nkhoma

Dr Rebecca Wilson

Dr Deokhee Yi

Trial Manager/Research Associate

Research Fellow

Research Assistant

Health Economist

As the Trial Manager for the multicentre OPTCARE Neuro trial, I am responsible for the smooth running and proper conduct of the trial. I am passionate about conducting good quality research and enjoy liaising with our trial sites to ensure accurate and timely data collection. Recruitment to the trial can be challenging but I feel proud to be co-ordinating this world-first study. In particular, I have really enjoyed working alongside our trial PPI committee and understanding the importance of this work for those affected by long-term neurological conditions and their families.

My work involves undertaking searches of literature and critically appraising the evidence to inform proposals, bids and publications. A major part of my role involves analysing primary data and preparing papers for academic publications. I am also involved in sharing research findings at conferences as oral or poster presentations, contributing to research grant applications, and mentoring BuildCARE Africa grantees as they prepare research proposals. I am currently developing and leading a research project on self-management interventions in HIV/AIDS. It pleases me that through this work, I am able to make a difference to patient’s lives.

I am currently working on two projects as part of my role at the Institute. I provide statistical support for the OPTCARE Neuro trial and have recently been working on the baseline data from the study to assess symptoms in this patient group. I also work on linked routine data to investigate health care utilisation and place of death in patients with serious mental illness in South London. I am fortunate that I am able to use my background in working with large datasets to contribute to the important research that goes on at the Institute.

As an economist I contribute to evidence on utilisation, costs and cost-effectiveness of the services in palliative and end of life care. Not a day passes without analysing data from trials and/or routinely collected sources. In addition to ‘value for money’ of the services I analyse, I am interested in values and preferences of service users. I work on the OPTBreathe study, started in July 2017, which aims to support older patients with refractory breathlessness by suggesting the most valued, accepted and cost-effective services from discrete choice experiments and economic modelling.

My role is overseeing the day-today running of the C-CHANGE project. My research expertise lies in intervention and health services research, using both quantitative and qualitative methods. I have experience of leading and managing different projects; casemix classification development in palliative care, self-management of acute coronary syndrome, and mapping of diversity teaching and learning in nurse education curriculum. I have also made major contributions to global health developments and teaching.

Staff / 103

PhD Students

Mary Abboah-Offei

Jo Bayly

Anna Bone

PhD Student

Cicely Saunders International PhD Training Fellow

I am a PhD student working on a project titled “Development and testing of a novel community-based intervention of integrated palliative care to improve person-centred outcomes for people living with HIV/AIDS” for my thesis. I am particularly passionate about providing person-centred care, and this forms the conceptual framework of my project. I have ethical approval and have completed a search and analysis for my systematic review, with a paper being drafted for publication in August 2017. I also work with the POS development team, where I help with POS translations; I am glad I can contribute in this regard.

I’m funded by the National Institute for Health Research to undertake a PhD here at the Institute. My research aims to develop and test a new model of rehabilitation for patients with lung cancer or mesothelioma in the period after diagnosis as they commence medical treatments. Prior to this role, I worked as a specialist physiotherapist at a hospice in Liverpool. In addition to my PhD studies, I participate in the Institute’s training programme and am a member of the Athena SWAN and Education executive groups. I’m enjoying being involved in the MSc in Palliative Care programme as a personal tutor, marking and teaching the students.

I have a varied role that involves departmental responsibilities alongside my own research project. I am an active member of two departmental executive groups, which involve developing strategy for improving the quality and impact of the department’s research. I supervise students and mark dissertation projects for the MSc in Palliative Care. My PhD work involves liaising with clinicians, patient recruitment, and data collection, as well as desk-based statistical analysis. With a background in public health, I particularly enjoy analysing large population-based datasets, but also find visiting older people at home fascinating and rewarding.

Joanna Davies

Dr Mendy Dzingina

Clare Ellis-Smith

Dr Simon Noah Etkind

Dunhill Medical Trust PhD Training Fellow

Cicely Saunders International PhD Clinical Training Fellow

Cicely Saunders International PhD Training Fellow

Cicely Saunders International PhD Clinical Training Fellow

I joined the Institute in 2012 and have worked on death registry data for the whole of England to investigate inequality in place of death, and more recently worked with clinical patient-centred outcome data to evaluate patient complexity and quality of care. My interests are in understanding the dynamics of social deprivation and end of life health outcomes, and in using routine data to improve patient and family care. I am currently being funded by the Dunhill Medical Trust to complete my PhD on understanding the social determinants of outcomes important to older people at the end of life.

I am in the final year of my PhD, and as part of this I have developed a health-economic version of the POS called the POS-E – via a valuation survey – which can be used to derive palliative care-specific QALYs for use in assessing the value for money of palliative-care interventions. I am excited about this project as it means we can make a better case for additional resources for palliative care patients in the future. I also work part-time as a Health Economist on the C-CHANGE project, which aims to improve the palliative-care funding system in the UK.

I am passionate about interventions that improve the quality of life and wellbeing of people with dementia. As a PhD fellow, I have developed and evaluated a measure to improve assessment and management of symptoms and concerns experienced by people with dementia living in care homes. I have enjoyed all aspects of carrying out this research, but it has been particularly rewarding to have developed a measure to improve the care of people with dementia, which is now implemented by clinicians as part of routine care.

I’m a clinician by background, and am part way through my specialist training in Palliative Medicine. In my role as a clinical PhD fellow, I am undertaking research investigating the care preferences of frail older people. This involves collecting questionnaires and qualitative data from older people who have recently been admitted to hospital to try and understand their preferences in greater depth. I also chair our active Patient and Public Involvement (PPI) group, and work with our PPI representatives to ensure our research is focused on the needs and priorities of our patients.

104 / Cicely Saunders

Dr Lesley Anne Henson

Dr Pauline Kane

Cheng-Pei Lin

Dr Natasha Lovell

Cicely Saunders International PhD Clinical Training Fellow

PhD student

Cicely Saunders International PhD Clinical Training Fellow

My PhD thesis explores factors associated with multiple emergency department visits towards the endof-life by people with cancer. This involved quantitatively analysing linked population-level data from the Office for National Statistics and Hospital Episode Statistics, as well as conducting qualitative interviews with people who had presented to the emergency department. I hope to use these findings to develop a screening tool or early warning system that can identify people at risk of aggressive end-of-life care.

I have had the opportunity to undertake a feasibility study while benefiting from the support and expertise at the Cicely Saunders Institute. My study involved a longitudinal study of the feasibility of a patient-reported outcome measure in clinical practice which sought to improve the assessment and management of symptoms and concerns in heart failure. I have had the privilege of working with individuals with heart failure in Ireland as part of this study, and this experience has reinforced my enthusiasm to increase access to palliative care for individuals with non-cancer conditions.

Eve Namisango

Dr Jen-Kuei Peng

BuildCARE PhD Training Fellow

PhD student

My research interests include outcome measurement, symptoms, knowledge translation, culture and end of life care in resourcelimited settings. My PhD furthers knowledge in a field I am very passionate about; children’s palliative care. I serve as Research and Development Manager at the African Palliative Care Association where I coordinate the Pan African Palliative Care Research Network and mentor upcoming researchers in the region. I am an active member of the International Society of Quality of Life Research.

I am a physician from Taiwan and particularly interested in palliative care for non-cancer and older people. As a PhD student at the Cicely Saunders Institute, my project aims to analyse the associations between longitudinal patterns of healthcare, factors and outcomes in patients with end-stage liver disease. These patients are so vulnerable and in need of good healthcare, yet little is known about this research area. I’m glad that I can work and study with all my colleagues at the Institute, who are so knowledgeable and supportive. I hope my study can inform future care improvement and make a difference to patients’ end-of-life journeys.

I joined the Cicely Saunders Institute in October 2016 to work as a PhD student with Professor Richard Harding, Dr Catherine Evans and Dr Jonathan Koffman. I have a background in nursing, and worked as an oncology nurse in Taiwan before studying at the Institute. My research interests are in hospice and palliative care, especially for cancer patients. I am now conducting a study to develop an advance care planning programme and will be testing its feasibility for end-of-life cancer patients in Taiwan. I am so glad that I can work with many excellent colleagues in such a vibrant and welcoming facility.

Research Assistants, Knowledge Mobilisation and Other Researchers

The activities I engage in dayto-day vary and include visiting patients at home to collect data for my PhD, teaching and supervising medical students & MSc students, contributing to the Athena SWAN SAT, organising the methodological skills teaching, and providing clinical cover for the Palliative Care Team. As a Specialist Registrar in Palliative Medicine, improving the management of symptoms such as breathlessness is really important, and this makes my PhD a really exciting opportunity. Although a challenge at times, I have really enjoyed the transition from clinical to academic medicine, and the opportunity to develop my own thoughts and ideas.

Hamid Benalia Research Associate/E-learning & Technology I lead the Institute’s digital technology activities, specifically by creating eLearning materials, writing website content, building online platforms to increase the reach and impact of our research and submitting grant applications for further funding. I am currently developing eLearning content on outcome measurement as well as a platform dedicated to innovation in breathlessness management. My role also involves overseeing our live streaming and video production activities and I administer several online platforms and websites on behalf of the Institute. I find it very rewarding to make our research findings accessible to an increasingly wide audience.

Staff / 105

Lisa Jane Brighton

Maja de Brito

Laura Cottrell

Marsha Dawkins

Research Assistant

NIHR Knowledge Mobilisation Research Fellow

My core interests are around communication skills, staff wellbeing, and the psychological aspects of palliative care. I have primarily worked on projects focused on how best to train generalist palliative care providers in compassionate communication and end of life care skills. This has involved conducting mixed methods evaluations of existing training programs and collecting qualitative data to inform future training and research methods. I am also a core member of our Patient and Public Involvement strategy group, and I particularly enjoy how this work prompts us to think differently and more creatively about our research.

As a Research Assistant for the DINAMO project, I have been recruiting patients and family carers and collecting qualitative and quantitative data about their preferences for home palliative care through interviews. We are now analysing these and aiming to identify the optimal model of home palliative care service. I am pleased that I have almost daily contact with patients and families, and it is very exciting to be a part of the improvement of home palliative care services in Portugal. I also help with the organisation of the Clinical-Academic Forum in Palliative Care in various regions in Portugal.

I recently joined the Institute as a Research Assistant on the IARE II Study. My disciplinary background is in nursing; I am a PhD Candidate in Nursing at the University of Alberta in Canada. I have worked as a Research Assistant at the University of Alberta and as a trainee with the Canadian Frailty Network on several studies in community and rural palliative care as well as on a project developing innovative support tools for the family caregivers of persons with dementia. In my PhD I am using qualitative methods to explore hospice patients’ experiences of joy at the end of life.

Beth Edwards

Lucy Fettes

Alice Firth

Javiera Leniz Martelli

Research Assistant

I am a Research Assistant on the C-CHANGE project, a study exploring the needs of adult palliative care patients and their families. We hope to better understand complexities and needs at the end of life, so that we can ensure better quality care. My role focuses on recruiting patients into the study and collecting questionnaire data from them, their families and healthcare staff. As we’re entering the final phase of the project, I’m keen to think about how we disseminate research findings to everybody, not just those engaged with palliative care services.

I am a Research Assistant and Specialist Physiotherapist, with a strong research interest in palliative rehabilitation. I am very excited to be working on a study exploring the use of Goal Attainment Scaling (GAS) in hospice rehabilitation services, adding to the growing body of research in this field. This study aims to improve palliative rehabilitation services by aligning care to the needs and rehabilitation goals of patients. My role involves working closely with clinical teams across ten UK hospices, providing staff training on the use of GAS, supporting recruitment, monitoring data collection, data analysis, writing reports and disseminating findings.

I work as a Research Assistant on the C-CHANGE project, which aims to improve the matching of resources to patient and family’s needs. My work includes collaborating with hospices, community services and hospital advisory teams across the country as well as the recruitment of patients and carers, data collection and analysis, and understanding outcomes and transitions of care. I am especially interested in how the model of care patients and their families receive effects their outcomes, care and experiences. I am a member of the Palliative care Outcome Scale (POS) development team and coordinate international translations.

As a Research Assistant for the Institute, I work with projects that focused on transitions of care and place of death in the last year of life, particularly for people with dementia. The main purpose of our research is to provide information that might help to avoid unnecessary hospital admissions and transitions of care at the end of life. My role involves secondary database analysis of routinely collected data, as well as supporting project related activities and meetings. I am passionate about making an impact by informing policy and commissioning, to improve patients’ experience of care.

I am an NIHR Knowledge Mobilisation Research Fellow and my area of research focuses on collaborative methods of knowledge creation and dissemination across organisational boundaries in the implementation and use of patient-centred outcome measures. My work enables the sharing of evidence across the clinical academic interface and within and across organisations. I worked as a Clinical Nurse Specialist in palliative care before joining the Cicely Saunders Institute in June 2014 as a Quality Improvement Facilitator for the Outcome Assessment and Complexity Collaborative (OACC) project.

106 / Cicely Saunders

Dr Adejoke Oluyase

Sophie Pask

Cathryn Pinto

Richard Edward Turner

Research Assistant

I am working as a Research Assistant on a Cochrane Review investigating the effectiveness of inpatient specialist palliative care in acute hospitals for adults with advanced illness and their caregivers. The numbers of inpatient specialist palliative care teams are increasing due to the unmet needs of inpatients and their caregivers. However, the effective components of this intervention are yet to be ascertained. I am excited to be working on this topic and hope our findings will contribute to understanding and implementing evidence-based inpatient specialist palliative care.

I am a Research Assistant on the C-CHANGE project, which aims to improve the way we allocate resources to patients and their carers. This involves recruitment of patients and carers to different parts of the programme of research, data collection and analysis, and understanding outcomes and transitions of care. I also co-lead the Patient and Public Involvement (PPI) activities in the department. This is one of my main passions, as I believe the patient, carer and public voice is intrinsic to guiding our research. I’m glad that I have been able to contribute and help to develop the PPI group within the department.

My role is to recruit patients and family members to the C-CHANGE project, complete questionnaires and conduct interviews with them, analyse data and publish papers about our findings. I liaise with hospitals, hospices and community palliative care services across the UK and work closely with palliative care professionals to recruit study participants. I am passionate about improving care for patients and families and, in particular, the provision of psychological care.

I have recently joined the department to work on the OPTCARE Neuro trial recruiting and interviewing study participants. I have worked in research from 2000, on ‘The Cambridge study in delinquent development’. Since then I’ve continued working mostly in data collection, in both academic and clinical environments, and have undertaken over 500 home visits with research participants. I have also co-authored papers published by the Home Office. Within the UK Clinical Research Network, I have helped local sites to bid for commercial research.

Ka Man Yip

Emel Yorganci

Dr Dominique Wakefield

Research Assistant

NIHR academic clinical fellow

I joined the Cicely Saunders Institute in January 2017 to work as a Research Assistant (Data) on the C-CHANGE project. I deal with the C-CHANGE data using STATA: cleaning, managing and combining different datasets. I am especially passionate about data analysis, and finding outcomes and insights from analysing different kinds of data.

In my role as the Research Assistant for the ImproveCare study, I communicate with the research teams at four district general hospitals in order to ensure that the study is being carried out with high fidelity at all times. I also conduct interviews with patients and their relatives, and collect data from the healthcare professionals. While collecting data, I also aim to publicise our study and engage with academic and public audiences. As part of the Athena SWAN committee, I also work with my colleagues to promote gender equality and progression in our field.

I’m an NIHR academic clinical fellow in palliative medicine undertaking 6 months research within the Institute. I’m working on a number of different projects within the Institute, including; using a discrete choice experiment to inform economic evaluation modelling work for a breathlessness support service; and conducting secondary data analysis on a large quantitative dataset to explore the relationship between healthcare service factors and grief following bereavement. I’m grateful for the opportunity to contribute towards the Institute’s ethical and robust research which serves to improve palliative care and rehabilitation.

Staff / 107

Research Nurses

Evelyne Burssens Senior Research Nurse As the Senior Research Nurse for the Institute, my role involves providing palliative care research to palliative care units within the South London CRN region. In order for studies to run smoothly, I work collaboratively with academic and clinical research teams. I am passionate about making sure that patients and their family are protected and well supported throughout a research study. I am glad to be part the network and play an important role in increasing its research activity.

Chifundo Stubbs Research Nurse I joined the Cicely Saunders Institute in December 2016 as a Research Nurse having worked in clinical settings for 5 years. I originally worked in the banking, finance and insurance industries after receiving my BSc in International Finance and Trade. I am responsible for collecting data for the NIHR portfolio studies which is of vital importance to what we do at the Institute in terms of helping shape the future of palliative care services. Due to my role at the Institute, I have become a strong supporter for meeting the needs of dementia sufferers and their carers.

Professional Services

Maria Joao Cardoso Teixeira Research Nurse As a research nurse, my role involves informing patients and their family about the several research projects we have to offer at the Institute as well as providing support for anyone wishing to participate. Working together with other researchers is important as many of our projects are run in other hospitals as well as in hospices. I am really passionate about palliative care and I am committed to making a difference to patients’ lives. I am glad that I can contribute to the important work being done at the Institute as it continually strives to improve patient and family care.

Param Kaler Research Nurse I joined the Cicely Saunders Institute in April 2014 as a Research Nurse, after qualifying as a nurse in 2008 and previously working in acute medicine. I work on a broad range of studies in the department, including OPTCARE Neuro, C-CHANGE and PiPS2, helping with the recruitment of patients and families, and data collection.

Sian Best

Charlotte Faint

Administrative Director, Cicely Saunders International

Research PA to Herbert Dunhill Chair

I joined the Institute in 2005 as an administrator, becoming Business Manager in 2012. In 2016, I became Administrative Director of the charity Cicely Saunders International. My current role includes implementing and developing administrative systems and processes that support the strategic aims of the Charity and the Cicely Saunders Institute, supporting the Trustees in the day to day management of the Charity and liaising with teams at the Institute to support integration, communication and collaborative working.

I provide administrative support to the rehabilitation team and Herbert Dunhill Professor at the Institute. The team works with patients and families to develop intensive, individualised rehabilitation programmes for adults with severe, complex disability. I coordinate the Seminar Series at the Institute which optimises opportunities for local, national and international networking within palliative care and rehabilitation. A highlight of my time at the Institute was representing the Institute at the European Association for Palliative Care conference in 2017, where I introduced the Institute and our research to a global audience.

108 / Cicely Saunders

Daniel Gulliford

Lara Klass

Lelia Oniri

Debbie Tonkin

Project Administrator, OPTCARE Neuro/PA to Dr Wei Gao

Project Administrator

OACC & CLAHRC Project Administrator

Institute Business Manager

I provide administrative support for the NIHR funded OPTCARE Neuro project, arranging and minute-taking for a variety of project-related meetings, liaising with funders, patients and potential study sites, compiling and circulating a 6-montly e-newsletter and completing data entry, amongst other tasks. I also provide high level secretarial and administrative support for the Senior Lecturer in Statistics and Epidemiology. It is exciting to take on a range of different responsibilities and work for an institute at the forefront of Palliative Care Research.

I provide administrative support for Project GlobalCARE, as well as The Fellowships Consortium and IARE II study, which are collaborations with Trinity College Dublin and the Icahn School of Medicine at Mount Sinai in New York. As a senior administrator at the Institute, I help to develop materials to communicate our research, including reports, policy briefs, and social media content. I also coordinate engagement activity, including our visitors programme, events series and the Annual Lecture.

As a senior administrator, my role involves joining up NIHR CLAHRC South London and a number of departmental projects, supporting the process of funder reporting and raising awareness of our research through the production of newsletters and other materials. In addition, I provide support to the OACC and POS project teams, liaise with other stakeholders to produce and update POS website content and organise and publicise the annual POS Workshops, as well as other events. Working at the Cicely Saunders Institute has been insightful and an opportunity to add value to the amazing work produced by the projects.

Mark Willis

Katie Witcombe

Charlotte Wood

MSc Administrator

Outreach Administrator

Executive Assistant

As an MSc Administrator, my role is fast paced and diverse. I liaise with students, colleagues, external lecturers, and various departments throughout the University. As a multi-professional and international course, I see many students from different backgrounds come to the Institute to study together. It is a thoroughly rewarding experience knowing that they will implement the skills learnt and make a difference in their own practice. I’m also involved with the administration of the PhD and MBBS programmes, as well as a member of PAN and Athena SWAN, which has given me greater insight into working at King’s.

As the Outreach Administrator for the Institute, my role involves communicating our work and findings via Twitter, blog posts, news articles, policy briefs or infographics – whichever showcases our research in the most engaging and accessible way. I am also developing a programme of public engagement events, in partnership with St Christopher’s Hospice and our Patient and Public Involvement group, to introduce new audiences to the research taking place at the Institute. I’m glad that I can contribute to the important work at the Institute by spreading the word about our research and the difference it can make to patients’ lives.

My role in the department is to provide high level administrative and executive support to Professor Richard Harding and his corresponding research projects. As part of the Institute’s professional services team I also provide general departmental administrative duties and research support. A passion of mine is identifying and facilitating the improvement of mental and physical well-being among the staff at our Institute. This has culminated in a bi-annual ‘Health and Wellbeing Week’, with a programme of workshops, talks and activities to improve mental health awareness, inform staff about resources available and reduce stress.

On a day to day basis I work with academics and researchers to prepare grant applications for submission to funding bodies, and work with Principal Investigators to monitor their grant budgets. I also co-ordinate the professional services team within the Institute, and work to ensure their continued professional development. This enables our academics and researchers to access the support required to successfully complete their research projects. I’m really proud to work within an Institute that works so hard to improve quality of life for patients with palliative care needs, and with colleagues who are inspirational in their passion to do so.

Staff / 109

Clinical King’s College London Denmark Hill

Dr Rachel Burman

Dr Matt Carey

Dr Polly Edmonds

Consultant in Palliative Care and Honarary Senior Lecturer

Registrar in Palliative Medicine

Clinical Director for Cancer and End of Life Care

In my current work I lead on the development of palliative care for people with neurodegenerative disorders and am a member of the multiprofessional MND Centre. I worked in cardiology and neurology before entering a career in palliative care, which has given me a commitment to the palliative care needs of patients with a nonmalignant diagnosis. A Masters in Medical Law and Ethics informs my interest in planning and decision making in advanced disease and also the relevance of the Human Rights Act to healthcare provision.

Dr Rishma Pau

Dr Wendy Prentice

Palliative Medicine SpR

Consultant and Honorary Senior Lecturer

I am a Palliative Medicine Specialist Registrar and in the penultimate year of my training. As well as my clinical work, I am involved in the education of undergraduates and post-graduates, including multi-disciplinary teaching. I am particularly interested in education and hope to have a role in curriculum planning in the future for undergraduate and post-graduate medical training. My current research interest is in Kennedy Terminal Ulcers, particularly whether there is evidence for their existence and the clinical relevance.

I qualified in 1992 and have a background in general medicine and a broad experience of palliative medicine in a variety of settings. I am the Clinical Lead for the clinical service across both sites and I’m responsible for the strategic development of the team. I’m invested in the better integration of specialist palliative care services within non-specialist settings, and have particular interests in intensive care, hepatology and complex decision making at the end of life. I also teach undergraduate and post graduate students.

I am a Registrar in Palliative Medicine and I’m part of the King’s College Hospital Palliative Care Team. I was previously a registrar in acute and intensive care medicine but switched to palliative medicine in 2015, and previously worked at Pilgrims Hospice in Kent and St Christopher’s Hospice in Sydenham before joining King’s. I am particularly interested in the interface between acute medicine and palliative medicine and how palliative medicine is delivered in a range of different areas.

Paula Alves de Oliveira Machado Palliative Care Practice Development Nurse I work as a Practice Development Nurse for Palliative Care. My role involves supporting and educating nurses, healthcare assistants and other clinical staff by teaching and working clinically. I have reinstated the palliative link group – a meeting with nurses and healthcare assistants from different wards to teach and share good practice for end of life care. I have a role in supporting the nurses on the ‘St Christopher’s-Health and Ageing Unit-Oncology’ rotation programme. I am particularly interested in the influence of culture on palliative care.

In addition to my clinical commitments, I am involved in specialist training, am a member of the palliative medicine SAC, and chair the standard setting group for the specialty certificate examination. In senior management roles at King’s, I am Clinical Director for Cancer and End of Life Care, the Trust’s cancer lead clinician, and most recently have been working across the Denmark Hill and PRUH sites to support clinical colleagues to improve cancer diagnostic pathways and to improve the governance around delivery of cancer services.

Leanne Boyle Clinical Nurse Specialist in Palliative Care My role involves providing physical, psychological, social and spiritual support for patients with life limiting malignant and non-malignant conditions. I also advise and plan complex discharges for patients returning to community services. My background has been in hospice inpatient nursing and working at delivering a model of care to enhance advance care planning with oncology patients. My interest is the provision of palliative care in an aging population with multiple co-morbidities. I deliver palliative and end-of–life teaching to nurses new to the trust.

110 / Cicely Saunders

Chris Bridges

Connie Jackson

Ciara Wynne-Gallagher

Steve Marshall

Palliative Care Clinical Nurse Specialist

Clinical Nurse Specialist in Palliative Care

Palliative Clinical Nurse Specialist

Palliative Care Social Worker

As a clinical nurse specialist in palliative care, my role involves supporting patients with life limiting illnesses along with their carers, within King’s College Hospital. I help to ensure that they have effective symptom control and appropriate psycho-social support. I also support the ward staff in their care delivery and their learning and help them to provide good palliative and end of life care. I have a special interest in non-malignant liver disease.

As a CNS in palliative care my role revolves around providing holistic assessment to those patients and their families/carers referred to the service, providing symptom control advice to parent teams and supporting complex discharge planning for end of life care. I am also involved in providing educational support to professional colleagues and have been particularly involved in the Healthcare Assistant Induction programme. I have a particular interest in neurology, elderly care and stroke, and enjoy the challenges of providing palliative care in these areas.

I joined the team in June 2017 and I have a background in community palliative care, hospice care and intensive care nursing. As a palliative CNS I am directly patient-facing and provide holistic assessment, symptom control and psychosocial support for the patients in our care. I also promote palliative care and provide education to professionals in the trust. I have specialist interest in the role of palliative care within Intensive Care.

As one of the social workers for the clinical team, I provide practical and emotional support to palliative care patients and their families. My main areas of interest are families with young children, financial advice, and capacity/legal issues. I am particularly interested in improving bereavement support for people whose loved one has died in an acute hospital setting. I recently completed my PhD research into the experience of teenagers and young adults having cancer treatment. I enjoy working in a clinical palliative care team that is very active in education and research.

Nicola Oldcroft

Xan Neethling

Tara White

Palliative Care Social Worker

Specialist Palliative Care Team Manager

Macmillan Information & Support Centre Manager

I joined the Institute in May 2011. As team manager for the clinical team my main responsibility is to support the operational running of the service by ensuring that the team are equipped to deliver the highest possible quality of patient care. My role involves supporting the teams’ governance, service development and strategic initiatives as well as the day to day practicalities of running the office smoothly. It has also been a great pleasure to be a founding member of the Institute’s Gardening Club.

I oversee the day to day running of the Macmillan Centre. We offer ‘drop-in’ support to anyone living with a long term illness, however the vast majority of our service users are cancer patients and their support networks. On a daily basis we will provide emotional and/or practical support to ‘drop-ins’; this can be anything from managing finances, to making difficult treatment decisions, to coping with a new diagnosis. I enjoy patient interaction and being able to offer emotional support in a calm and welcoming environment.

The majority of my work is across the hospital’s intensive care wards providing psycho-social, emotional and practical support to patients and families dealing with critical illness and often sudden and traumatic death. I have a special interest in this kind of pre and post bereavement support. I am involved in teaching on the advanced psycho-social module for the MSc on this topic and I have been developing staff support for critical care nurses in dealing with death and dying. I am also the lead facilitator for Schwartz Rounds in the hospital. I enjoy the variability of my role and being part of a prominent multi-disciplinary team.

Staff / 111

King’s College London Princess Royal University Hospital

Dr Lynne Marsh

Dr Fiona Ring

Deborah Brown

Consultant in Palliative Medicine

CNS Macmillan

I am a consultant in palliative medicine. My work is mostly clinical with educational and management aspects relating to the development of the palliative care team based at the Princess Royal University Hospital site. I am interested in improving palliative care in acute medicine and geriatrics.

I am a Consultant in Palliative Medicine based at the Princess Royal University Hospital. In my role I am primarily a clinician, delivering a high quality palliative care service for patients and those important to them. I have a particular interest in teaching and I’m the Education Lead for Palliative Care at the Princess Royal University Hospital site.

I work as a Clinical Nurse Specialist for palliative care and lung cancer. I work as part of the lung cancer MDT and see patients in the respiratory clinic when they are being investigated for lung cancer. I also act as a key worker for lung cancer patients once they are diagnosed here at the PRUH. I am part of the hospital palliative care team at the PRUH and assess and review patients on the wards after they have been referred.

Lyn Chandler

Diane Farrington

Claire Plant

Maxine West

Clinical Nurse Specialist in Palliative Care

Clinical Nurse Specialist in Palliative Care/Metastatic Breast Cancer

Clinical Nurse Specialist

Specialist Palliative Care Administrator

As a CNS in palliative care my role revolves around providing holistic assessment, which includes giving advice regarding symptom control to the referring teams. I support complex discharge planning for end of life care and I also provide educational support to professional colleagues on the wards to help them provide good palliative and end of life care. I help recruit patients that are suitable for any research studies that the team are currently working on. I have a special interest in upper GI/ hepatobiliary disease, end stage renal failure and dementia.

My role includes providing holistic assessment to people referred to the service, providing symptom control advice to medical teams and supporting complex discharge planning for end of life care. I see patients who are newly diagnosed with metastatic disease and those that have progressed through treatment. I am able to introduce the concept of palliative care by providing advice on symptom control, giving emotional support, and introducing advance care planning where appropriate. I am also a liaison between the oncologist and the community teams.

As a CNS I visit all the wards in the hospital giving specialist palliative care advice. This includes specialist holistic assessment and complex symptom control, facilitating end of life care and using iCARE priorities for the care of the dying person; Psychological support for patients, families and staff and facilitating complex discharges and transfer to the hospice. I have a special interest in staff development and training and have provided teaching and support for all levels of staff in the hospital. I am involved in clinical audit and research, and actively recruit patients to projects.

I joined the PRUH Palliative Care Team in June 2015; my role involves providing quality comprehensive administrative support. In addition, my role is to design and refine the administration systems to support the clinical palliative care team, I also provide collaborative liaison with internal and external stakeholders to provide continuity of care for patients and their families.

112 / Cicely Saunders

Dr Teresa Beynon

Dr Irene Carey

Dr Nick Gough

Consultant in Palliative Medicine

I am a Consultant in Palliative Medicine and an Honorary Senior Lecturer at the Cicely Saunders Institute. My particular research interests are access to palliative care services, Cutaneous T-cell lymphoma (CTCL) and the impact of vitamin deficiencies in advanced disease.

I have been a Consultant in Palliative Medicine at Guy’s and St Thomas’ NHS Foundation Trust since 2004. My interests include renal palliative care and the needs of patients with lung cancer. I have jointly led the development of the AMBER care bundle, which aims to improve patient-centred care and decision making for patients with an uncertain potential for recovery. The care bundle is now being implemented in over 30 hospitals nationally.

I am a Consultant in Palliative Medicine at Guy’s and St Thomas’ NHS Foundation Trust. I trained at University College London gaining degrees in both medicine and a BSc in pharmacology. My training in palliative care included rotational appointments at St Christopher’s Hospice, King’s College Hospital and Royal Marsden Hospital. I have a keen research interest in cancer and quality of life and was awarded a Doctor of Medicine in 2015 from the Institute of Cancer Research for my thesis entitled “Advanced soft tissue sarcoma: health related quality of life, symptom burden and prognostic indicators”.

Dr Shaheen Khan

Dr Steven Wanklyn

Honorary

Dr Bárbara Antunes

Consultant in Palliative Medicine and Clinical Lead

Consultant Pharmacist in Palliative and End of Life Care

I graduated from Guy’s, Kings’ and St Thomas’ Medical School, having also been awarded a first class honours degree in BSc Neuroscience. I completed the MSc in Palliative Care from Kings’ College London in 2010, and in 2011 was awarded a postgraduate certificate in clinical leadership. I am now the lead clinician for the Guy’s and St Thomas’ NHS Foundation Trust community palliative care team. I act as the training programme director for the King’s Health Partners palliative medicine StR training scheme and I am also co-chair of the London Opioid Safety and Improvement Group.

I am a qualified pharmacist helping people with cancer or other life limiting conditions to get the most from their medicines and experience treatment at the very best level. My interests include developing specialist pharmacy services for the hospice sector which focus on optimising the use of medications, including the use of self-administration schemes. Outcomes are person-focused and monitored against indicators of quality and safety that demonstrate improved experience and meet the requirements of our regulator and commissioners.

Guy’s and St Thomas’ NHS Foundation Trust

Visiting Research Associate I qualified as a Clinical Psychologist in 2003 in Instituto Superior de Ciências da Saúde – Norte, Portugal where I also completed my MSc in “Psychology of Pain”. I have always integrated clinical work with research posts. In 2008 I joined the Portuguese research centre Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC). I joined the Institute in 2010 and received a fellowship through the EU funded EUROIMPACT project as a Marie Curie Early Stage Research Training Fellow.

Staff / 113

Professor Claudia Bausewein

Dr James Murray Beattie

Dr Sara Booth

Professor Julia Downing

Visiting Senior Lecturer

Honorary Senior Lecturer

I am a Consultant Cardiologist, working predominantly in heart failure, with a long held interest in palliative care. Previously I was a National Clinical Lead with NHS Improvement, contributing to the development of heart failure services, including end of life care across England, and served as a Trustee of the National Council for Palliative Care. I co-authored the European Society of Cardiology (ESC) guidelines on heart failure palliative care and I’m a member of the ESC Heart Failure Association Palliative Care Task Force. I aim to help consolidate this well established area of departmental activity.

I am an Honorary Consultant and Associate Lecturer at University of Cambridge. I have a longstanding interest in breathlessness which was stimulated by my time at St Christopher’s Hospice, where I carried out a randomised controlled trial of effectiveness of oxygen air in the relief of cancer dyspnoea. I have collaborated with the Institute to develop services using a rehabilitative model looking at integrating wellbeing interventions into the management of symptoms, and founded the specialist Breathlessness Intervention Service (BIS) at Cambridge University Hospital.

Chief Executive of the International Children’s Palliative Care Network (ICPCN) and Honorary Professor at Makerere University, Uganda

Professor Rob George

Dr Julie Kinley

Professor Fliss Murtagh

Medical Director St Christopher’s Hospice, Professor of Palliative Care

Visiting Research Associate

Visiting Professor of Palliative Care since 2017, previously Reader in Palliative Medicine

Visiting Professor I qualified in medicine at Munich University in 1992. My medical background is internal medicine although I have been involved in palliative care in Germany for more than 30 years. I obtained an MSc for Palliative Care and my PhD on breathlessness in advanced disease from King’s College London where I also worked in the Cicely Saunders Institute for 5 years. In 2012, I was appointed Professor of Palliative Medicine at the University of Munich.

I am Medical Director for St Christopher’s Hospice as well as a consultant at Guy’s and St Thomas’ Hospitals integrated local community palliative care service. My overarching academic interests are to understand the nature of suffering across different cultures and the complexities that this introduces to care and service delivery. I was Clinical Lead for palliative and end of life care for London between 2009–2013, and was President of the Association for Palliative Medicine between 2013–2017.

As Nurse Consultant for Care Homes at St Christopher’s Hospice, I lead a team that supports 150 local care homes, through a model of facilitation based on research findings including those from my PhD. I joined the Cicely Saunders Institute in 2017 and am site lead at St Christopher’s for C-CHANGE. With an interest in outcome measures and expertise in implementation and care homes, I am working alongside Catherine Evans and Clare Ellis-Smith and my initial focus is supporting the development of the IPOS-Dem outcome measure.

I lead projects and teams working on patient-centred outcome measures in palliative care, and development of a UK case-mix classification for palliative care. I am passionate about developing new researchers through teaching, supervision, leadership and support. I was Postgraduate Research Coordinator for the Institute, however in early 2017 moved to Hull York Medical School to become Professor of Palliative Care at University of Hull. I have a number of roles supporting palliative care research, including with Hospice UK, NHS England, and Public Health England.

I am an experienced palliative care nurse, educationalist and researcher, having worked within palliative care for 27 years in the UK, Uganda, Africa, Eastern Europe and globally. I am the Chief Executive of the International Children’s Palliative Care Network and an Honorary Professor at Makerere University, Uganda. I am a Visiting Professor at the University of Belgrade, along with several universities in the UK. I am a board member of IAHPC, WHPCA, PCAU, the Palliative Care Research Society and Hospice in the Weald.

Dr Christina Ramsenthaler Former PhD student, Quality of life in multiple myeloma From 2010 to 2016 I was a Research Assistant and then a PhD student at the Institute, working on a project to understand trajectories of quality of life in multiple myeloma and how these can potentially inform early integration of palliative care into haematological care. I am incredibly grateful for the excellent guidance and the huge learning opportunities during my time at the Institute. I remain passionate about the integration of palliative and haematological cancer care, and the implementation of outcome measures in routine practice.

114 / Cicely Saunders

Dr Lucy Selman

Professor Richard Siegert

Dr Steffen Simon

Research Fellow at the University of Bristol

Professor of Psychology and Rehabilitation at AUT, New Zealand

Visiting Research Fellow I am a Consultant at the Department of Palliative Medicine, University Hospital Cologne, Head of the multi-professional Hospital Palliative Care Team, Executive Consultant of the Clinical Trials Unit of Palliative Medicine and a Specialist of Internal Medicine from my clinical background. My research interests are breathlessness, palliative care for patients with non-oncological diseases, outcome measures and guideline development. I am currently working in cooperation with the Cicely Saunders Institute within the field of breathlessness and the development and evaluation of outcome measures (mainly IPOS).

Professor Barbara Singer Chief Censor for the Australian College of Physiotherapists

From 2013–16, I was Cicely Saunders International Faculty Scholar, a prestigious post-doctoral post for future leaders in palliative care. My research focuses on psychosocial and spiritual aspects of the illness experience and of care provision, decision-making and communication, family care-giving, cultural factors in care provision, and end of life care education and training. In 2015–16 I was Principal Investigator on the Transforming End of Life Care study at the Cicely Saunders Institute, which focused on the education, training and support of generalist palliative care providers. I am currently a Research Fellow at the University of Bristol.

I am a Professor of Psychology and Rehabilitation at the Auckland University of Technology, a Visiting Professor at KCL, and worked at the Institute from 2007–2011. My research interests include psychometrics, outcomes in mental health and rehabilitation, goal setting and applying mindfulness techniques for people with chronic health conditions. I am on the editorial committee of the journals Disability and Rehabilitation and Mindfulness. I am also an author on over 120 articles in international journals and two popular textbooks on rehabilitation. My most recent book is Rehabilitation Goal Setting: Theory, Practice and Evidence published recently by CRC Press/ Taylor and Francis.

Rev. Dr Peter Speck

Liba Stones

Dr Liesbeth van Vliet

Susanne De Wolf

Visiting Senior Lecturer

Visiting Research Associate

Researcher at Netherlands Institute for Health Services Research

Visiting Research Associate

I graduated in Zoology and Biochemistry before studying for an MA in Theology. Following a hospital chaplaincy position in Sheffield, I became Lead Chaplain and Honorary Senior Lecturer in medical ethics at Royal Free Hospital, London. I have served as a member of several Research Ethics Committees and a co-chair of Clinical Ethics Group. My research studies include spirituality in health care, dignity therapy, and ageing. I have authored or contributed to several textbooks in palliative care, teamwork, pastoral care and bereavement and was awarded a Doctor of Medicine degree in 2012.

I gained an MA in Anthropology and Indonesian Studies at Charles University in Prague in 2003 and an MBA at the Open University in 2013. I started my career in NHS management in Cumbria where I held various project management posts and set up the first clinical research team and research portfolio in mental health and community services. I subsequently held Research Manager posts at Barnet and Chase Farm Hospitals and Royal Free Hospital. Since 2015 I have worked as Research & Innovation Manager at King’s College Hospital where I run the clinical research operation in one of the UK’s largest and most research active NHS teaching Trusts.

I hold a BSc (Hons) and MSc in Clinical Psychology and obtained my PhD at Utrecht University, where my project focused on communication at the transition to palliative cancer care. From 2013-2015 I worked at the Cicely Saunders Institute with EUROIMPACT on PROMs and within OPTCARE Neuro on palliative care for neurological diseases, and have remained involved in several projects. I recently obtained a Young Investigator Grant of the Dutch Cancer Society to study the negative effects of information provision in palliative care at the Netherlands Institute for Health Services Research.

I am a neurological physiotherapist with extensive clinical experience in a variety of settings from acute neurosurgery to rehabilitation. For the past decade I have coordinated postgraduate Diploma and Masters degrees for physiotherapists interested in neurological rehabilitation. I am a Fellow of the Australian College of Physiotherapists (ACP), and Chief Censor for the ACP, overseeing the training program for physiotherapists engaged in the specialisation pathway.

I worked at the Cicely Saunders Institute from 2012- 2016, first as a NIHR funded research nurse in palliative care and then as a Quality Improvement Facilitator for the Outcome Assessment and Complexity Collaborative (OACC) project. The focus of my work was on teaching and support for clinical teams, evaluating the implementation of outcome measures in order to change routine practice and improving the quality of palliative care provided in collaboration with clinical teams. I am currently working at the University of Zurich for Applied Sciences as a Research Associate, on a project looking at pain assessment in people with dementia.

Staff / 115

Previous members of staff (since 2014) Name

Position

Year of Departure

Barbara Antunes

Early Stage researcher/Marie CuriePhD Training Fellow

2014

Henrietta Kaye

EA to Dr Richard Harding

2014

Natalie Campbell

Research PA to Professor of Neurorehabilitation

2014

Andrew Steer

MSc Administrator

2014

Katrien Moens

Visiting Research Associate

2014

Vera Paiva Brandao De Napoles Sarmento

Clinical PhD Research Training Fellow

2014

Rowena Vohora

BuildCARE Administrative Assistant

2014

Esther Groeneveld

Research Assistant

2014

Grace Beer

Research PA to Professor of Neurorehabilitation

2014

Katharine Bailey

C-Change Research Associate

2015

Liesbeth Van Vliet

Trial Manager, Research Associate OPTCARE NEURO

2015

Maria Heldakova

PA Administrator

2015

Stephen Kriese

NIHR PhD Training Fellow (Clinical)

2015

Jana Witt

Project Manager/Research Associate

2015

Mevhibe Hocaoglu

Research Assistant

2015

Michaela Eccles

Administrator

2015

Brenda Ferns

Administrative Director Cicely Saunders Foundation

2015

Sue Molony

BuildCARE Administrator

2015

Indira Ghosh

PA/Administrator

2016

Barbara Daveson

Cicely Saunders International Lecturer

2016

Pauline Kane

Cicely Saunders International BuildCARE PhD Training Fellow

2016

Diana Jackson

Research Fellow

2016

Lesley Henson

Cicely Saunders International PhD Clinical Training Fellow

2016

Christina Ramsenthaler

Research Assistant

2016

Francesca Cooper

Projects Administrator – BuildCARE/OACC

2016

Farhin Bhatti

Research PA to Professor of Neurorehabilitation

2016

Fiona Wong

EA to Professor Higginson/Department Manager

2016

Melinda Smith

IARE BuildCARE Research Assistant

2016

Sumaya Huque

Research Assistant

2016

Clare Pearson

Research Assistant

2016

Susanne De Wolf

Quality Improvement Facilitator

2016

Agnes Spring-Rice

Departmental Administrator/Personal Assistant

2016

Emma Bennett

Research and Dissemination Facilitator

2016

Lucy Selman

Cicely Saunders International Faculty Scholar

2017

Felicity Murtagh

Reader of Palliative Medicine

2017

Gilda Andreani

EA to Professor Higginson/Department Manager

2017

116 / Cicely Saunders Institute

Roxana Vanderstay

Lecturer in Health Services Research

2017

Zaynah Sheikh

Project Administrator

2017

Sophie Watson

PA to Head of Division/Dept. Admin

2017

Alanah Wilkinson

Research Administrator

2017

Ashwiny Kistnareddy

EA to Professor Irene Higginson/Department Manager

2017

Caty Pannell Caty Pannell, who tragically died on Wednesday 2nd November 2016, was a talented nurse who improved the quality of palliative care for many patients. In 2010 she took up the new post of Palliative Care Research Nurse in the Cicely Saunders Institute at King’s College London. In this pioneering post, she recruited people across the South London Clinical Research Network. Sometimes visiting patients at home, Caty encouraged those with serious illnesses to make their own decisions about helping with research into areas such as breathlessness. Her findings would help towards relieving this, and other symptoms, of disease. She was awarded a certificate of excellence for innovative research into palliative care for people with Parkinson’s, and was co-author of four academic research papers, one now cited in American oncology guidelines. As well as the immeasurable difference that she made to the lives of many patients and families, her legacy also includes raising over £3,000 for Cicely Saunders International, Macmillan Cancer Support and Asthma UK via: http://uk.virginmoneygiving.com/ SomeoneSpecial/Caty_Pannel. Caty was an integral member of the department, as well as a deeply warm and generous friend and colleague – she is greatly missed although the Institute staff, students and colleagues benefit from the long lasting legacy of her many innovations and her work.

Publications / 117

The Athena SWAN charter, established by the Equality Challenge Unit, recognises and celebrates good practice towards the advancement of gender equality: representation, progression and success for all. Since our inception in 1997, the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation has embodied equality and diversity principles through fostering a culture of collaboration, mentorship, peer support and inclusive decision-making. This was enhanced and formalised by our department adopting the Athena Swan Principles and Charter in 2013, and our subsequent Bronze

Award in 2014 which recognised the work we have done to promote gender equality and to identify and address challenges particular to the department and discipline. In September 2016 we achieved a Silver Athena Swan Award from the Equality Challenge Unit in recognition of our response to previously identified challenges and demonstration of the impact of the actions implemented. The Athena Swan Self Assessment Team (SAT) works hard to monitor equality practice, deliver to our action plan, and measure appropriate outcomes. Alongside this, we are continuing to consider ways to improve the working environment and culture of the Institute, and ensure equity in access to training and development, for all staff members.

Image: Dr Jonathan Koffman and Lisa Brighton accept the Athena SWAN Silver Award on behalf of the Cicely Saunders Institute.

118 / Cicely Saunders Institute

Research Support All of our research and fellowships rely on external support, and winning peer review grants. We thank all the organisations and individuals without whom our work would not be possible, in particular;

Fondazione Maruzza Lefebvre D’Ovidio Onlus

Action Medical Research

Health Education England

Addenbrooke’s Hospital

Hospice UK

African Palliative Care Association

Joseph Rowntree Foundation

AIDS Star

King’s College Hospital NHS Foundation Trust

Big Lottery Fund

Macmillan Cancer Support

British Heart Foundation

Marie Curie

British HIV Association

Maudsley Charity

British Medical Association

Medical Research Council

Calouste Gulbenkian Foundation

Medical Research Foundation

Cancer Research UK

Mental Health Foundation

Cicely Saunders International

Mildmay

Columbia University

MND Association

Department of Health

MS Society

Difficult Conversations

Myeloma UK

Duke Institute on Care at the End of Life

National Cancer Research Institute

Dunhill Medical Trust (Note: not associated with the Tobacco Industry and fully compliant with the Joint Protocol of Cancer Research and Universities UK on Tobacco Industry Funding to Universities, 2004)

National Council for Palliative Care

Economic and Social Research Council

National Institute for Health Research

European Union

Open Society Foundations

Family and Friends of Rob Buckman

Palladium International

Fondazione Floriani

PF Charitable Trust

Gatsby Foundation Guy’s & St Thomas’ Charity Guy’s and St Thomas’ NHS Foundation Trust

National Hospice and Palliative Care Organization National Institute for Health and Care Excellence

Research Support / 119

Public Health England Robert Bosch Stiftung Robert Luff Foundation Ltd Roy Castle Lung Cancer Foundation Sainsbury Family Charitable Trusts Sir Halley Stewart Trust St Christopher’s Hospice St Stephen’s AIDS Trust Stroke Association The Academy of Medical Sciences The Atlantic Philanthropies The Diana, Princess of Wales Memorial Fund The Dinwoodie (1968) Settlement The Elizabeth Clark Charitable Trust The Garfield Weston Foundation The Health Foundation The King’s Fund The Kirby Laing Foundation The Nuffield Trust The Rayne Foundation The Samuel Sebba Charitable Trust The Wolfson Foundation Union for International Cancer Control United States Agency for International Development Wellcome Trust World Health Organisation

120 / Cicely Saunders Institute

Acronyms AIDS

Acquired Immunodeficiency Syndrome

AMBER

Assessment, Management, Best Practice, Engagement and Recovery uncertain

APCA POS

African Palliative Care Association Palliative Outcome Scale

ArmA

The Arm Activity measure

AROC

Australasian Rehabilitation Outcome Centre

ART

Antiretroviral Therapy

BoNT-A

Botulinum toxin type A

BSRM

British Society of Rehabilitation Medicine

BuildCARE

Building Capacity, Access, Rights and Empowerment

CLAHRC

Collaboration for Leadership in Applied Health Research and Care

COPD

Chronic obstructive pulmonary disease

CQC

Care Quality Commission

CRIS

Clinical Records Interactive Search

CSI

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

EAPC

European Association for Palliative Care

EoLC

End of Life Care

FAM

Functional Assessment Measure

FIM

Functional Independence Measure

Follicular Lymphoma

GAS

Goal Attainment Scaling

Acronyms / 121

GASeous

GAS Evaluation of Outcome for Upper-limb Spasticity

GASLeg

GAS Leg Spasticity

General Practitioner

HIV

Human Immunodeficiency Virus

IARE

International Access Rights and Empowerment

ILD

Interstitial Lung Disease

IPD

Interstitial Pulmonary Disease

IPOS

Integrated Palliative care Outcome Scale

IPOS DEM

Integrated Palliative care Outcome Scale for Dementia

ITU

Intensive Therapy Unity

LegA

Leg Activity measure

LegTS

Leg Therapy Schedule

LGBT

Lesbian, Gay, and Bisexual and/or Trans

MCID

Minimum Clinically Important Difference

MND

Motor Neurone Disease

MORECare

Methods for Evaluating service Delivery Models for End of Life

Care Development of best practice guidance MS

Multiple Sclerosis

MyPOS

Myeloma Palliative care Outcome Scale

NHS

National Health Service

NIHR

National Institute for Health Research

NMES

Neuromuscular Electrical Stimulation

NPTDA

Northwick Park Therapy Dependency Assessment

OACC

Outcome Assessment and Complexity Collaborative

ONS

Office for National Statistics

OSF

Open Society Foundation

POS

Palliative care Outcome Scale

122 / Cicely Saunders Institute

POS-S

Palliative care Outcome Scale â&#x20AC;&#x201C; Symptoms

PPI

Patient and Public Involvement

PROMs

Patient Reported Outcome Measures

RCT

Randomised Controlled Trial

REF

Research Excellence Framework

RHRU

Regional Hyper-acute Rehabilitation Unit

SIPC

Short-term Integrated Palliative Care

SIPScare

Short-term Integrated Palliative and Supportive care

SPACEtoolkit

Symptom and Psychosocial Assessment and Communication Evaluation

SPC

Specialist Palliative Care

Tuberculosis

UKROC

UK specialist Rehabilitation Outcomes Collaborative

ULS

Upper Limb Spasticity

ULIS

Upper Limb International Spasticity Study

ULSTR

Upper Limb Therapy Recording Tool

WHO

World Health Organization

Acronyms / 123

Our team, 2017

We welcome enquiries about any aspect of our work: Cicely Saunders Institute Kingâ&#x20AC;&#x2122;s College London Bessemer Road Denmark Hill London SE5 9PJ United Kingdom Tel +44 (0)20 7848 5516 Fax +44 (0)20 7848 5517 Email palliativecare@kcl.ac.uk Website www.csi.kcl.ac.uk Twitter @CSI_KCL YouTube https://www.youtube.com/user/CSIKCL Designed by Soapbox, www.soapbox.co.uk