Cicely Saunders Institute Spotlight on research
Cicely Saunders Institute Spotlight on Research
Welcome Dr Wei Gao Lead for Research Strategy and Quality Professor Irene Higginson Director, Cicely Saunders Institute
The Cicely Saunders Institute pioneers the very best in palliative care and rehabilitation through the integration of cutting-edge research, skilled multi-professional care, and innovation in engagement and education. In this booklet we spotlight our research activity. We have selected examples from our programmes to introduce you to some of the latest developments to drive evidence based practice and improve care for people affected by serious illnesses, wherever they are cared for. Research at the Cicely Saunders Institute focuses on:
• Evaluating and improving care (for people with cancer, respiratory disease, heart failure, liver, kidney and neurological disorders). • Symptom research (discovering new ways of controlling common distressing symptoms, including pain, breathlessness, nausea, fatigue and spasticity, and undertaking trials into new treatments). • Measuring outcomes (developing and implementing robust patient-oriented measures of outcomes in palliative care and rehabilitation). • Living and dying in society (investigating care for older people, support for caregivers, cultural issues in palliative care and other issues reflecting how the way we live and die is changing). We actively engage with patients, families, professionals, policy makers, the public and the media. These outreach activities support recruitment, evidence uptake, and enhance the value of our research in policy and commissioning arenas. To find out more about what we do, or to get involved with our research, please visit our website: www.kcl.ac.uk/palliative
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Evaluating and improving care
Our research estimates that, although people are living longer, by 2035 the annual number of deaths will increase by 15%. Almost half of those dying will be aged over 85. The future need for palliative care and rehabilitation is estimated to be three or four times what is currently offered. Therefore, it is vital that society provides appropriate care and effective services. We focus on the needs of older people as these are often the most vulnerable members of our society. With increasing age comes complexity. The challenge for many individuals is that the result of what is a natural physiological decline means they often have to deal with illness, alongside other chronic medical conditions (multi-morbidities), and frailty, whilst also managing their psychological wellbeing. Our work has pioneered ways to improve services and care for people severely affected by Multiple Sclerosis (MS), renal failure, organ failure, and complex disabilities. In all of these we keep at the core, how to understand and meet individual preferences and priorities for care. However, as the global number of eight million cancer deaths is projected to increase, palliative care for people affected by cancer remains a priority. Our goal is to improve care for patients and those close to them, such as their families. We conduct research to develop and evaluate new treatments and services, studies to improve people’s access to care, and on the outcomes from the therapies they receive. Our research also advances treatments for pain, breathlessness and other distressing symptoms, ways to improve cost-effectiveness, and to meet the needs of family members and care providers.
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The future need for palliative care and rehabilitation is estimated to be three or four times what is currently offered.
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We hope to find out whether patients with long-term neurological conditions would see an improvement in their symptoms as a result of earlier intervention by palliative care teams.
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OPTCARE Neuro
Long-term neurological conditions such as Parkinson’s disease, Multiple Sclerosis and Motor Neurone Disease affect more than 10 million people in the UK. We hope to radically improve the way in which people affected by these conditions are cared for. We are leading a world-first trial across multiple centres, investigating the effectiveness of early palliative care for patients with long-term neurological conditions. We hope to find out whether patients would see an improvement in their symptoms as a result of earlier intervention by palliative care teams, who are experts in symptom management and supportive care. OPTCARE Neuro will also discover much more about the needs and concerns of people affected by these conditions. Palliative care provides an additional layer of support for people living with advanced illness. At present, patients with neurological conditions are offered palliative care only when their illness is very advanced or at the end of life. This often means their symptoms, emotional, social and spiritual needs are not properly addressed, leading to suffering of them and their families. OPTCARE Neuro aims to discover better ways of providing care. It will test whether patients and their families would benefit from a short-term integrated palliative care service – in particular, whether the service will help people to live as well as possible, despite their illness. People taking part in the study will have three visits from a specialist palliative care team over a period of 12 weeks. The study partners with seven centres across the UK including in: London, Nottingham, Cardiff, Liverpool, Brighton, Sheffield, and Ashford and St Peters’ Hospitals in Chertsey.
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TOPCare
Around 13 million people in the world with HIV are accessing antiretroviral therapy (ART). They have persistent physical, psychological, social, and spiritual problems, which are associated with poor quality of life and treatment outcomes. Our work in sub-Saharan Africa includes the TOPCare trial, carried out in Kenya. TOPCare found that simple person-centred assessment and care delivered by existing staff who received additional training had positive effects on both quality of life and psychosocial wellbeing. The trial is the first to assess the effectiveness of using existing healthcare staff and infrastructure, and its findings have a major potential impact on palliative care for people living with HIV. The success of this simple programme means existing nurses and medical professionals can be trained in palliative care. This is vital in countries with little resource for new medical staff. It is also a promising model for health services around the world. Our TOPCare trial has shown how successful international collaboration can be. We worked in partnership with Bomu Hospital, Mombasa; the Kenyan Hospice Palliative care Association; the University of Nairobi; and, Coast Hospice. Our team at the Cicely Saunders Institute has been leading palliative care research for many years with partners in Africa including the Hospice Palliative Care Association South Africa, the African Palliative Care Association and the Hospice Africa in Uganda. This project will not only help people in Kenya, it will inspire other countries to improve their healthcare provision too.
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The TOPCare trial is the first to assess the effectiveness of using existing staff and infrastructure. This is vital in countries with little resource for new medical staff.
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BuildCARE has uncovered and quantified current and future needs, and is forging ways to better capture the cost-effectiveness of palliative care and rehabilitation.
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BuildCARE
Project BuildCARE is a major international collaboration to Build Capacity, Access, Rights and Empowerment through research and engagement in palliative care. Capacity building includes Faculty Scholar and PhD training initiatives aimed at recruiting the future leaders of palliative care and enabling them to research the concerns of people affected by serious illness while honing their skills. BuildCARE research has revealed new factors that are associated with emergency admissions to hospital for people with cancer at the end of life. This has been published in the major cancer journals and is influencing how emergency admissions can be prevented. In Ireland, research has uncovered and quantified current and future needs for palliative care. Annually, 80% of deaths in Ireland are from conditions considered to lead to palliative care needs. This higher proportion may be the result of the rapidly aging population, particularly evident in the 13.9% increase of deaths among those ≼85 years. Indeed, our research suggests that Ireland appears to have the most rapidly rising need for palliative care in Europe. Building on these findings we are pioneering research to better meet the needs for people affected by heart failure. Research is also forging ways to better capture the costeffectiveness of palliative care and rehabilitation, in particular whether we can re-engineer some of the traditional approaches that miss the nuanced and individual concerns of people affected by serious and progressive illness. Research is also testing ways to improve care for people with dementia in care homes, a growing concern for palliative care.
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International Access, Rights & Empowerment (IARE)
IARE is an international project within the BuildCARE programme that aims to better understand the needs of people aged 65 and over who need palliative care, and their families. The study compares and contrasts London, Dublin, New York City and San Francisco, collecting similar information from people receiving palliative care and from bereaved families and friends. IARE explores how patients decide their preferences in complex, clinical settings and the barriers and facilitators to accessing specialist palliative care in hospitals. In all countries, IARE has found that older patients rely heavily on hospital services during the last three months of life. Most visited Accident and Emergency (A&E) twice and used ambulance services multiple times. This is despite a preference for home care as much as possible. There seems to be a conflict between the way in which older adults actually use health systems and policies in all settings to provide more care in the community. We have also found that preference for inpatient hospice or palliative care unit is quite high in all countries, and in the USA the palliative care ward within the hospital is also favoured. In the IARE study, we are measuring the formal and unpaid (informal) care costs involved in caring for someone during the last three months of life. Unpaid care costs (such as those provided by family and friends) are by far the largest component of costs in all countries, followed closely by hospital costs.
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IARE has found that older patients rely heavily on hospital services during the last three months of life despite their preference for home care.
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Pain is one of the most common and distressing symptoms in cancer patients but nearly 50% of cancer pain is undertreated.
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Symptom research
We are discovering and testing effective ways to prevent and treat the many symptoms experienced by people with serious illness. Our clinical research has been targeted towards symptoms that have been neglected in the past including breathlessness, some types of pain, depression, spasticity, fatigue, frailty and multiple symptoms. Pain, for example, is one of the most common and distressing symptoms in cancer patients. Drugs can be used to control cancer pain for the majority of patients but nearly 50% of cancer pain is undertreated. Our research analysed the records of nearly 30,000 cancer patients from GP practice routine data, and investigated prescribing patterns for all painkillers, including opioid analgesics (the strongest types of painkillers including morphine and diamorphine). We found an encouraging increasing trend of opioid prescribing by GPs in the UK for patients who are in the last 3 months of life. However, people older than 60 years were significantly under-prescribed and should be targeted for improvement in their end-of-life cancer care. More investigation is needed to determine why opioids are used less commonly in older patients. We studied symptom prevalence across different non-cancer diseases. Most people had multiple symptoms; 11 were very common, with pain, breathlessness and fatigue being particularly widespread. Our findings suggest a common pathway in advanced illness in terms of symptom experience. Therefore, hospice and palliative care are relevant beyond cancer.
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Holistic breathlessness programme
Our breathlessness programme forms a key part of our work focused on clinical research on symptoms. Breathlessness is a common, distressing symptom in advanced disease, causing disability, anxiety and social isolation for patients and their family and caregivers. Breathlessness increases as disease progresses, is associated with shortened life expectancy, is frightening for patients and families, and often results in emergency visits and hospitalisation. But breathlessness does not occur alone. Most people with breathlessness had 13-14 other symptoms that also need treatment and care and are often missed. Breathlessness is a marker of worsening illness. Clinicians too experience distress when faced with this symptom due to a lack of effective interventions. Our initial work described types and trajectories of breathlessness, compared experiences across different diagnoses, and reviewed drug and non-drug treatments for the symptom. We then examined promising treatments in clinical trials. A key feature of our work is our multi-professional approach, which acknowledges the importance of features outside of the lungs, for example skeletal muscles and the brain. We have led the way in understanding appropriate treatment targets for people with chronic refractory breathlessness to help them live with the symptom, and we have trialled a joint palliative care and respiratory medicine Breathlessness Support Service (BSS) in London and, with others, a Cambridge-based Breathlessness Intervention Service (CBIS). Published in Lancet RespMed we found these new services improved quality of life and survival at no additional cost to the NHS, patients, families or social care.
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Our new breathlessness services improved quality of life and survival at no additional cost to the NHS, patients, families or social care.
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Neuromuscular electrical stimulation treatment led to improvements in leg muscle strength and size, which translated into an improved ability to exercise.
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Neuromuscular electrical stimulation
People with chronic obstructive pulmonary disease (COPD) often report a reduced ability to exercise, which affects their everyday independence. There are several reasons for this, including leg muscle weakness that can develop from the adoption of a sedentary lifestyle – often due to breathlessness and a downward spiral of physical inactivity. Exercise can help, and is offered in the form of pulmonary rehabilitation, but the reach of these services is limited by issues with service provision and poor uptake due to symptom burden or social isolation. One alternative treatment is neuromuscular electrical stimulation, or NMES, which uses a small battery-operated stimulator and pads placed over each thigh to produce a comfortable contraction of the leg muscles. NMES can be self-administered at home, unsupervised, and doesn’t provoke breathlessness so may be more acceptable to patients living with a high-symptom burden. In our new study, fifty-two people with severe COPD and experiencing breathlessness were randomly allocated to receive either active or sham NMES for half an hour, daily, over a sixweek treatment period. Compared to sham, the active NMES treatment led to improvements in leg muscle strength and size, which translated into an improved ability to exercise. On average, people performed about 15% better in a short walking test following the use of NMES. During interviews, people who had received NMES also reported greater ease in undertaking activities of daily living, such as climbing the stairs. Future research may consider trialling longer or more comprehensive NMES based programmes, including education and behaviour change components.
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Spasticity
It is estimated that approximately one-third of stroke patients, 60% of patients with severe multiple sclerosis (MS), and 75% of patients with physical disability following severe traumatic brain injury will develop spasticity that needs to be treated. As a result of brain or spinal cord damage, some patients find that their limbs resist movement, or become partially paralysed. This is because involuntary over-activity causes their muscles to contract, stiffen and shorten. If left untreated spasticity can cause pain, deformity and impaired function. It can have a negative effect on both patients’ ability to perform everyday tasks, and on the ease with which others can care for them. Management is complex. Our research includes investigations into a diverse range of interventions including medical (drug) treatments and physical rehabilitation treatments. For example, local intramuscular injections of botulinum toxin are used to relax muscles, and the application of external devices such as casts or splints (i.e. splinting) are used to maintain muscle length and the shape of the body tissue. The primary aim of the treatment of spastic muscles is to maintain length and allow normal positioning of the limbs to prevent secondary soft tissue shortening. This is essential if there is to be any possibility of recovery or rehabilitation. We have produced national guidelines for the management of spasticity using botulinum toxin and concurrent therapy interventions, and for splinting. These guidelines have a considerable impact on clinical practice as they ensure research is applied within a clinical setting to improve the way neurodisability and spasticity is managed.
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Our research includes investigations into a diverse range of interventions including medical (drug) treatments and physical rehabilitation treatments.
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POS helps us to ensure that we provide the most effective and appropriate care for individual patients.
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The Palliative care Outcome Scale (POS)
We measure the outcomes of the care we provide and the treatments we give in order to set standards of care. Here at the Cicely Saunders Institute, we have been developing outcome measurement tools to help us ensure that we provide the most effective and appropriate care for individual patients. One such tool, is the Palliative care Outcome Scale (POS). POS is a questionnaire that covers physical symptoms, psychological symptoms, spiritual considerations, practical concerns, emotional concerns and psychosocial needs. There are two versions of the questionnaire, one for patients the other for staff. Bringing together these two perspectives allows the POS to identify patients' problems and enables staff to provide individualised care. The POS was first developed in 1999 and is now widely used all around the world including in Europe, Australia, Asia, Africa and America. We have made the questionnaire easily accessible via a dedicated website, pos-pal.org, and it is currently available in 11 languages. The POS measures are specifically developed for use among people severely affected by diseases such as cancer, respiratory, heart, renal or liver failure, and neurological diseases. There are extended versions of the questionnaire available for patients living with different conditions such as multiple sclerosis, Parkinson’s disease and end-stage renal disease. The POS provides valid results when used in a variety of settings, such as, home care, hospice or day care, and hospital inpatient care as well as outpatient and community services. It has also been shown to be a credible research and audit tool and so is frequently used to guide clinical practice.
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Creating a C-CHANGE in Care
Most of the care undertaken by hospices and palliative care teams is not systematically captured and therefore can’t be used to demonstrate the difference made to patients and families. However, capturing this is difficult, often because individual patients and families have such varied needs and concerns. Our major programme, C-Change, is developing and validating a person-centered, nationally applicable casemix classification for adult palliative care. This classification will reliably reflect the complex needs and concerns of people affected by serious illness, in order to enable the delivery of better quality and more efficient care in the last year of life. Linked to this, we have established a new collaboration, The Outcome Assessment and Complexity Collaborative (OACC) to work with patients, families and clinicians across South East London to help raise the standards of care for those nearing the end of their lives or needing palliative care. OACC developed a suite of outcome measures, training materials and feedback strategies for palliative care services. So far more than 180 Resource Packs have been provided to national palliative and end-of-life care services and 5 have also been provided internationally. The teams using the measures tell us that these resources help them to gather vital information to tailor care for each individual, maintain high standards and minimise variations in practice. As well as hard copy and electronic materials, practitioners can also access a telephone support line and monthly webinars – which allow them to network and discuss the challenges and successes.
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C-Change is developing a person-centered classification which will reliably reflect the complex needs and concerns of people affected by serious illness.
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Many of the patients we see in rehabilitation have difficulty completing questionnaires and so we have developed assessment tools that are adapted for disabled individuals.
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Improving outcomes from Rehabilitation
Many of the patients we see in rehabilitation have cognitive and communicative deficits as a result of long term neurological conditions and brain injury. These patients often have difficulty in completing questionnaires or reporting symptoms such as pain and depression. Our projects have therefore involved development and evaluation of several original assessment tools adapted for disabled individuals. Our research has focused on the development of outcome measures with which to assess the effectiveness of rehabilitation intervention, and on exploring the relationship between the different outcome assessment tools currently used in the UK. The UK specialist Rehabilitation Outcomes Collaborative (UKROC) has been set up to develop a national database of information from inpatient rehabilitation services. In the first 7 years UKROC has focused on patients with Long Term Neurological Conditions. The database will ultimately include data from all specialist neurorehabilitation services across the UK. The data collected includes: demographic information; individual requirements for rehabilitation; documentation of the services actually provided; and the outcomes, or gains that are made during rehabilitation. UKROC data will provide case-by-case information on rehabilitation requirements, inputs and outcomes (including cost-benefits) of rehabilitation for patients with different levels of need. Our aim is to provide evidence to support the provision of effective, cost efficient rehabilitation services for patients with long term neurological conditions.
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ArmA and LegA
In order to establish what types of intervention are most effective and efďŹ cient for which patients, we require a record of both inputs and outcomes. We have developed (award winning) outcome measurement tools and systems for measuring change following intervention. Examples include the ArmA, which was developed to evaluate outcome following upper limb rehabilitation interventions. More recently, a leg activity measure, the LegA, has been in development for evaluating lower-limb function. In developing these outcome measurement tools, we have considered the need for standardization of measurement along with measures that are responsive to very specific and individual changes in each patient. For one patient with lower-limb spasticity, the rehabilitation goal may be to restore active function to improve their balance or walking speed, but for another, the goal may be to improve passive function which will make it is easier for the patient or their carer to dress and clean the limb. We see that it is important to measure the impact of treatments from the perspective of the patient and therefore our measurement tools can be used in busy clinical settings whilst also reflecting performance in the real-life context as closely as possible. The ArmA has been recommended in National Guidelines for management of spasticity using botulinum toxin and in the UK there has been a wide uptake in use of the ArmA in clinical practice. We are now working in collaboration with colleagues internationally to expand the use of the tool and improve outcomes for patients in France, Germany, Spain and Australia.
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It is important to measure the impact of treatments from the perspective of the patient. Our measurement tools reflect performance in the real-life context as closely as possible.
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Our aim is to provide evidence that will make it possible for patients to spend the last days of life being appropriately cared for in the place they want to be.
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Better meeting preferences
Over the last 15 years, researchers at the Cicely Saunders Institute have been investigating where and how people die, and people’s preferences. Our aim is to provide evidence that will make it possible for patients to spend the last days of life being well cared for in the place they want to be. This programme of studies has enabled an in depth understanding of where people die. We take into consideration individual, societal and healthcare implications and, in the longer term, our aims are to generate an optimized home palliative care model; one that responds to the challenges of caring in ageing populations and that improves further outcomes for patients and their families, without raising costs. We discovered that having a community palliative care service doubles a person’s odds for being able to die at home if they wish. Other home support, including nursing care, such as Marie Curie Nurses, and general practitioner (GP) home visits are important too. In addition, if family members or those close to the person who is ill are able to take time off work, this also helps, showing the vital need for policies and services to support family and friends. An important recent finding, from our QUALYCARE study and published in BMC Medicine, is that dying at home is better than hospital in terms of both peace for the person who is ill and subsequent grief for those close to them. But to achieve this requires a discussion of the person’s and their families’ preferences, GP home visits, and the carers or family members to be given time off work.
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Efficient study designs
At the Cicely Saunders Institute we are keen to ensure that we make our studies as efficient as possible. This helps funders, patients, families and society. We are establishing better ways to use routinely collected data for research in a programme called GUIDE_Care. As part of the South London National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) we are working with the UK Office for National Statistics (ONS). We are analysing death registration data to investigate whether the geographical location of healthcare services affects where people die. The initial study advanced our understanding of variations in where people die and what affects this. We found that although there was large variation, people’s personal characteristics did not influence the variation very much. In South London we are testing ways to link information from difference sources to provide a complete picture of palliative and end of life care services. A new project is extending this exploration nationally, to try to identify service configurations that make it possible for more people to be cared for well, in their place of choice. We will assess the role services play in where people are cared for and die, by major disease groups, by local areas (e.g. local authority or general practice) and at what quality.
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We are establishing better ways to use routinely collected data for research in a programme called GUIDE_Care.
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We are passionate about ensuring people live better with life-limiting disease, with dignity and choice, and minimal suffering, including to the end of their lives.
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About us
The Cicely Saunders Institute opened in 2010 and is the world’s
only purpose-built Institute dedicated to palliative care research. It brings together a community of academics, healthcare professionals, community organisations, patients and carers that share knowledge and skills across care settings, countries and disease groups. Palliative care aims to identify and manage the physical, psychosocial and spiritual problems of patients and families facing progressive, incurable illness. At the Cicely Saunders Institute, we are passionate about ensuring people live better with life-limiting disease, with dignity and choice, and minimal suffering, including to the end of their lives. The Cicely Saunders Institute is committed to pioneering research into palliative care and rehabilitation that feeds quickly into improving care for patients and their families locally, nationally and internationally. Dame Cicely Saunders trained as a nurse, a medical social worker and finally as a physician. From 1948 she was involved with the care of patients with terminal illness, lectured widely on the subject, wrote many articles and contributed to a great number of books. She founded St. Christopher’s Hospice in 1967 and was also involved with the creation of hospice teams around the world. She is universally recognised as the founder of the modern hospice movement. In 2002 she became the founder trustee of Cicely Saunders International and worked actively for the creation of a centre of excellence housing research, education, information provision and clinical care. Dame Cicely died on 14 July 2005. At the Cicely Saunders Institute, we celebrate the continuation of her life’s work.
Thank you We thank all those who have supported research, teaching and development in the Cicely Saunders Institute including: Academy of Medical Sciences Calouste Gulbenkian Foundation Cancer Research UK Marie Curie Cancer Programme Cicely Saunders International Diana Fund & HPCA Diana Princess of Wales Memorial Fund Dimbleby Cancer Care Department of Health Dunhill Medical Trust (Not associated with the Tobacco Industry
and fully comply with the Join Protocol of Cancer Research and Universities UK on Tobacco Industry Funding to Universities, 2004)
European Union European Union FP7 - Marie Curie Actions - Networks for Initial Training Family and Friends of Rob Buckman Futures Group International LLC Guy’s & St Thomas’ Charity Guy’s & St Thomas’ NHS Trust King’s College Hospital NHS Foundation Trust King’s College Hospital Charity Macmillan Cancer Support Marie Curie Medical Research Council
Medical Research Foundation MRF Alexander Fleming Motor Neurone Disease Association (Health Care Grants) MS Society Myeloma UK National Cancer Research Institute NHS Kidney Care National Institute for Health Research Open Society Institute Palliative Care Funding Review PF Charitable Trust Robert Bosch Stiftung Roy Castle Lung Cancer Foundation Samuel Sebba Trust Sir Halley Stewart Trust St Christopher’s Hospice South London NIHR CLAHRC Sussex Community NHS Trust The Atlantic Philanthropies The Dinwoodie (1968) Settlement The Garfield Weston Foundation The Kirby Laing Foundation The Rayne Foundation The Wolfson Foundation Wellcome Trust
Cicely Saunders Institute King’s College London Bessemer Road London SE5 9PJ T +44 (0)20 7848 5516 E palliativecare@kcl.ac.uk W www.kcl.ac.uk/palliative @CSI_KCL