EONS Magazine Autumn 2015 by European Oncology Nursing Society

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Autumn 2015

ECC 2015 Vienna Workplace stress: ‘An insidious enemy’

The shortage of nurses is a ticking timebomb

Survivorship – ‘Small things make a big difference’

Rosario Caruso

Martine Piccart talks to Jim Boumelha

Jane Maher

The only licensed antidote to anthracycline extravasation1 • Highly effective in reducing tissue damage 2 • Eliminated the need for surgery in 98% of patients 2 • A llows for the majority of patients to continue their next scheduled dose of cancer therapy on time 2,3 • Easy-to-use anthracycline extravasation emergency kit To learn about extravasation and the use of SAVENE® visit www.savene.com

IDENTIFY Know how to recognise and respond to an anthracycline extravasation

TREAT Administer SAVENE® as indicated within 6 hours of the extravasation³

RESUME

Treatment can continue once extravasation symptoms are relieved²

REFERENCES 1. Savene® Summary of Product Characteristics Available at www.medicines.org.uk 2. Mouridsen HT et al. Ann Oncol 2007;18(3):546-50 3. Fontaine C et al. Support Care Cancer 2012;20(5):1109-12 PRESCRIBING INFORMATION Savene 20 mg/ml powder for concentrate and diluent for solution for infusion Please refer to Summary of Product Characteristics (SmPC) before prescribing. Active Ingredient: vial contains 500 mg dexrazoxane, each ml contains 20 mg of dexrazoxane after reconstitution with 25 ml of diluent. Presentation: Each kit contains 10 vials of Savene Powder and 3 bottles of Savene Diluent (500 ml each). Indication: Treatment of anthracycline extravasation in adults. Posology and Method of Administration: Administration should begin as soon as possible and within 6 hours after the accident. Savene should be given as an intravenous infusion over 1-2 hours once daily for 3 consecutive days according to body surface area: day one, 1000 mg/m2; day two, 1000 mg/m2; day three, 500 mg/m2. For patients with a body surface area of more than 2 m2 the single dose should not exceed 2000 mg. Treatment Day 2 and Day 3 should start at the same hour ± 3 hours as Day 1. Cooling procedures should have been removed from the affected area at least 15 min before administration. Before infusion, Savene Powder must be reconstituted and diluted with Savene Diluent. Warnings and Precautions: Local examination should be performed on a regular basis after treatment until resolution and haematological monitoring should be undertaken regularly. Routine liver function tests are recommended before each administration of Savene in patients with known liver function disorders. Patients with renal dysfunction should be monitored for signs of haematological toxicity. Previous history of allergy to dexrazoxane should be carefully considered prior to administration. As the Savene Diluent contains potassium (98 mg/500 ml) the plasma potassium level of the patient must be closely monitored in patients at risk of hyperkalaemia. It also contains sodium (1.16 g/500 ml) which may be harmful to patientson a low sodium diet. Contraindications: Hypersensitivity to the active ingredient or to any of the excipients, women of childbearing potential not using contraceptive measures, breast-feeding or concomitant vaccination with yellow fever vaccine. Undesirable Effects: (Consult the SmPC for further

details about adverse reactions). Potentially serious adverse reactions include anaphylactic reactions. The most common adverse reactions are postoperative infection, infection, neutropenic infection, decreased appetite, dizziness, sensory loss, syncope, tremor, phlebitis, superficial thrombophlebitis, limb venous thrombosis, dyspnea, pneumonia, nausea, vomiting, diarrhoea, stomatitis, dry mouth, alopecia, pruritus, myalgia, vaginal haemorrhage, injection site pain, pyrexia, injection site phlebitis, injection site erythema, fatigue, injection site induration, injection site swelling, peripheral oedema, somnolence, decreased weight, would complication. Neutropenia, thrombocytopenia, hyponatraemia, hypocalcaemia and increased concentrations of liver enzymes (ALT/AST) have been reported as common laboratory findings. Interactions: Patients treated with anticoagulants should be monitored more frequently as cytotoxic agents may interact with oral anticoagulants. Concomitant use of immunosuppressives such as ciclosporin and tacrolimus receive extra consideration due to excessive immunosuppression. Savene is not recommended in combination with live attenuated vaccines or with phenytoin and is contraindicated with yellow fever vaccine. Dimethyl sulfoxide (DMSO) should not be used in patients who are administered Savene. Savene may add to the toxicity of the chemotherapy cycle therefore haematological monitoring is necessary. Pregnancy and Lactation: Savene should not be administered to pregnant women unless clearly necessary. Women of childbearing potential should use contraceptive measures during treatment. Breast-feeding is contraindicated. Men are advised not to father a child during and up to 3 months after treatment. Distributed by: Clinigen Healthcare Ltd, Pitcairn House, Crown Square, First Avenue, Burton-on-Trent, Staffordshire, DE14 2WW, United Kingdom Basic NHS Price: £6,750. Legal Category: POM. Marketing Authorisation Number: EU/1/06/350/001. Marketing Authorisation Holder: Clinigen Healthcare Ltd, Pitcairn House, Crown Square, First Avenue, Burton-on-Trent, Staffordshire, DE14 2WW, United Kingdom Date of Preparation: 20 April 2015

Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard. Adverse events should also be reported to: patientsafety@clinigengroup.com or fax 01283 495 034

Date of preparation: September 2015

SAV-032

www.clinigengroup.com

Contents Editor-in-Chief: Helen Oswald Executive Editor: Clair Watts Art Editor: Jason Harris Production Editor: Jim Boumelha

Autumn 2015

EDITORIAL 4 Vienna – Hosting the world Christine Schneider-Worliczek and Harald Titzer

Medical Editor: Catherine Miller Editorial Assistant: Rudi Briké EONS Secretariat: Haysmacintyre, 26 Red Lion Square London, WC1R 4AG, UK Phone: +32 (0)2 779 99 23 Fax: +32 (0)2 779 99 37 e-mail: eons.secretariat@cancernurse.eu Website: www.cancernurse.eu

LATEST NEWS

ongress’ – networking at ECC2015

THEOLOGIA TSITSI

Cyprus University of Technology, Cyprus This is the first time I am participating in an ECCO congress, although I have attended other major gatherings of nurses organised by EONS. We have come as a team from Cyprus and we are all thrilled to discover this awesome event. There are so many sessions, symposiums, workshops, keynote presentations and lectures that it is a real challenge to make a choice everyday about where to go. As well as being exposed to this wealth of information, it is a tremendous opportunity for us to be able to exchange talk and share ideas and experience with other nurses. Listening to colleagues who were awarded travel grants and many presenting their research was an eye opener and made me so much keener to take up new challenges. Many were inspirational.

ALYSSIA LANFRANCHI AND LAUREN STOK

University Hospital of Columbia and Cornell, New York, USA We’ve been searching for a European conference to go to for a few years as the practice is so different here to that in the States and we feel we can learn a lot. Of particular interest is the patient-centred care that is modelled here. At home we like to think we offer that but the emphasis is more on ‘patient satisfaction’, and that is not always the same thing. There is sometimes a conflict between what the patient thinks is best for them and what we know the best care choices are. In the US, the commercial angle can affect the attitude of the management and make them take the view that ‘the patient is always right’. Nurses can get caught in the middle of this. For example, patients may complain on their feedback form that they were not given what they wanted to eat, but the nurse may have decided that their unhealthy menu choices

were not appropriate for someone who has just had a heart bypass. The nurse can then be criticised by managers for this! We are particularly inspired by the nurse consultant role here. We don’t have that at home and the career development path for nurses is very limited if you want to stay at the bedside. You can’t progress without becoming a manager or moving into education. During the conference we have learned a lot of useful things. We particularly valued Catherine Oakley’s session describing the traffic light system which alerts patients to symptoms that should be reported promptly. It seemed simple and effective and we will try to introduce it back home. Patients can be bombarded by too much complex information. A culture change is needed – perhaps it would be better to give them just a treatment plan for each day, or stage by stage. All in all, the conference has made us think and we’ve learned so much – we’ve got a different perspective and have discovered another way of thinking about the patient experience.

Determined pioneer recognised for her work to put a new speciality ‘on the map’ Sam Smith, head of Nursing and Clinical Services for Teenage Cancer Trust, received the EONS Lifetime Achievement Award at the European Cancer Congress in Vienna.

Interview by Jim Boumelha

JASON HARRIS

or more than 20 years, Sam Smith has been arguing the case for teenage cancer patients to be treated by specialist services in special units. But when EONS announced her unceasing efforts have earned her a Life Time Achievement Award, she found herself lost for words. She soon recovered her voice, however, to tell her story: “It was a specialty which did not exist, as all teenage people were either in children’s care or in adult care. As a staff nurse, I used to go around the wards trying to find out where the young people were, tell them about our services, our units and try to win the hearts and minds of consultants.” Sam recalls where it all started. A group of women working in the field met a mother whose 13-yearold son had cancer and was being treated both in a children’s ward and alongside older people in an adult oncology ward. Not only was he facing the trauma of cancer and cancer treatment, but he was isolated from other young people going through the same thing. Teenage Cancer Trust grew out of the dedication and passion of that group (which included the trust’s life president and founder Myrna Whiteson MBE) who set out to provide a ‘teenage environment’ to help young people with cancer and raised the £330,000 needed to fund it. On 22 November 1990, Teenage Cancer Trust’s first specialist cancer unit at the Middlesex Hospital in London was officially opened. Sam herself has a life-long attachment to Manchester, where she trained as paediatric nurse, and her interest in

cancer care blossomed at Manchester’s Christie Hospital, one of Europe’s leading cancer centres. She worked there on the paediatric cancer ward, and she could see that teenagers under her watch were out of place. The charity got involved and set up the UK’s second teenager cancer unit. But Sam soon realised that this was just the beginning. “I was a staff nurse at the time and we had a lovely teenage unit with no patients in it,” she said. She recalls the early pioneers, like professor Tim Eden, who not only negotiated with the Trust to build the unit at the hospital, but began to define and develop the whole specialist service. “It was a movement that happened between professionals getting together and, once young people came to the unit, we realised how different they were, so this is where the specialty came from,” she said. For Sam and her colleagues it became crucial that the specialism was recognised and on the map. She recalls having all these young people in their care. “They complete chemotherapy and it’s the end of treatment but then they came back, struggling to cope. That’s when we realised that young people, young adults at the time, needed specialist support and treatment.” “On the one hand, cancer is the same disease across ages, but actually on the other it’s not – in young people it’s complex because you see late onset of paediatric tumours and early onset of typically adult tumours. You get the whole spectrum.” Although there were some tumours that are very specific to teenagers – Hodgkin’s lymphoma for example – it has taken many years to figure out that, in leukaemia, teenagers and young adults are actually better off with paediatric protocols than adult protocols, so there are some disease-specific elements that are unique. “But the main issue,” she adds, “is that in that gap between children and adults the needs are very different, so it’s just getting that independence, that sense of control; they may be moving on to work, developing social relationships, developing sexual relationships – so they are in total transition.” Although the EONS award was recognition of Sam’s personal achievement,

JASON HARRIS

ECC2015 Vienna

Above: Sam Smith, recipient of the EONS Lifetime Achievement Award, addresses congress.

Below: Sam Smith received her award from EONS President Danny Kelly.

she remains fully committed to her team, the “movement” that brought about the change. She highlighted the work of close colleagues and the teamwork, which achieved the setting up of special units all over the country, now numbering 28. “I am just humbled to get this awarded but it’s one for team… I would say it’s bigger than me and what this means is that we are finally on the map.” Sam has told her colleagues and her family – mum, husband and children about the award – but she did not expect too much jubilation. “Hey, they don’t work in my world! One of my sons is quite busy having just gone to university and my younger one is playing a really important football match today, so that’s more important for him than this!” Sam is looking further afield to increase the impact of her pioneering work, which has now spread internationally and is recognised in many countries. She is putting a tremendous effort into organising the first global congress next December in Edinburgh, Scotland. Making an impassioned call for everybody to join in, Sam said “We’re not that lone voice that we were 25 years ago and we are much more seen as leaders internationally in this field. I am putting the programme together. Speakers coming from all over the world are interested in taking this up. It’s really exciting.”

EONS grants and awards – advancing practice and developing careers EONS has created a range of grants and awards, all with the ultimate purpose of encouraging nurses to do excellent work and improve the general standard of oncology nursing in Europe. The winners were announced at ECC 2015.

CLINICAL TRAVEL GRANT 2015 Helena Ullgren Coordinating contact nurse, head and neck cancer, Regional Cancer Centre Stockholm-Gotland, Karolinska University Hospital, Stockholm, Sweden. Travelling to: New York University, to work with Dr Judy Haber, responsible for the Nurse Practitioner Programe; New Jersey Rutgers; Memorial Sloan Kettering Hospital, Outpatient Clinic 64th Street.

Helena Ullgren

Her three learning objectives are to: 1. Increase knowledge regarding advanced nursing roles, nurse practitioner (NP) and clinical nurse specialist (CNS). 2. Gain insight into how NP and CNS navigate the patient through their cancer care pathway, and also how they manage follow up. 3. Be inspired to develop a new way of working, maybe be able to develop/ influence a more clear advanced nursing role in Sweden. What are the benefits you see this visit will help you bring for patients? “Sweden has no developed/regulated roles for advanced nursing even if a lot of nurse-led services have been developed. Research from other countries (Swan, Ferguson, Chang, Larson & Smaldone, 2015) shows the benefits of advanced nursing roles in care and we need to learn more from other countries with more developed programmes in this area. We could increase patient care satisfaction by developing the advanced nursing role further. We could also offer more possibilities to keep experienced nurses with the patient by providing a more formal way of expanding our clinical role and expertise.” Matthew Fowler Advanced Nurse Practitioner, Heart of England NHS Foundation Trust, Clinical Haematology and Oncology, Birmingham Heartlands Hospital.

Travelling to: British Columbia Cancer Centre, Vancouver, to work with the Nurse Practitioner Team for Oncology. His three learning objectives are to: 1. Observe management of patients with Low Risk Febrile Neutropenia (LRFN) 2. Observe management of the emergency oncology/haematology pathway in the ambulatory setting 3. Compare and contrast the role of the Advanced Nurse Practitioner in Canada to that of the role in the UK. What are the benefits you see this visit will help you bring for patients? “The National Institute for Health and Care Excellence (2012) outlines the importance of looking into strategies to manage patients with LRFN in the community setting. I have researched the topic extensively and although this practice is commonplace in North America, this is not the case in the United Kingdom. The British Columbia Cancer Centre has a robust pathway for identifying and managing patients with LRFN in the community setting. I will be able to see not only how patients are managed with LRFN but also how patients with cancer are managed in the ambulatory setting. This has major implications for my nursing practice and more importantly for the patients I care for in my day-to-day practice.”

ECC2015 Vienna

Why did you choose this location for your research? “In 2005, the Dana Faber Cancer Institute in Boston USA, under the leadership of Dr Ann Partidge, established The Young and Strong Programme for Women with Breast Cancer under the age of 40. This programme provides comprehensive care and support to young women confronting the challenges of living with and beyond breast cancer. I am keen to meet both the clinical team and the programme coordinators to learn more regarding the administration and tools used in the programme, as well as clinical knowledge shared in practice and the clinical research done. I would like to learn more about their experience in the development of the programme. What obstacles and challenges did they face? What surprises did they find? What were the optimal methods to reach this patient group? Are there plans for further future developments? Does this extend beyond this patient group to include co-survivors? I want to learn from this collaboration and bring this back to the UK to develop a similar programme within the constraints of organisational, financial and resource scope.”

Lena Sharp with Carolina Chabrera

2015 EONS NOVICE RESEARCH DISSEMINATION AWARD

Carolina Chabrera TecnoCampus, Pompeu Fabra University Nursing, Mataro, Spain won for her abstract: A decision aid to support informed choices for patients recently diagnosed with prostate cancer: A randomized controlled trial. Valentina Biagioli University of Rome “Tor Vergata”, Biomedicine and prevention, Italy, won for her abstract: Propolis for prevention of chemo-induced oral mucositis in breast cancer patients: A randomized controlled trial. Both received free registration for ECC 2015 and funding towards their travel and accommodation expenses. At the congress, they presented their work to nurses from all over Europe, sharing their new knowledge and developing their skills as researchers and speakers.

Jincy Joseph Clinical and educational facilitator to nurses in the Oncology/Haematology Unit, St Vincent’s University Hospital, Dublin. Travelling to: National Heart, Lung and Blood Institute, Bethesda, Maryland, USA, to work with Georgie Cusack, Director of Research Nursing and Education Why did you choose this location for your research? “Georgie Cusack has extensive experience in clinical trials, oncology and ambulatory care. She will be able to guide me in this collaborative research project and to create a workflow process to reduce the waiting times for patients who are undergoing anticancer treatments across two large ambulatory oncology/hematology units in Ireland. I will be able to observe at first hand how a world class oncology/hematology day unit cares for patients safely and efficiently in the US, allowing me to create a process map incorporating Lean Principles/Productive Ward and Transforming Care at the Bedside and translate this process back to Ireland.”

2015 INVITED SPEAKER GRANT Two grants of EUR 1,000 each were awarded to the following organisations: ●● The Swedish Oncology Nursing Society – To invite Professor Mary Wells to speak at the Swedish Multi Professional Conference in Oncology Care, Umeå, Sweden, 17-20 March 2015. ●● The Lymphoma Association (as part of the Cancer Nursing Partnership with UKONS) – To invite a speaker for the Lymphoma Clinical Nurse Specialist Masterclass on 23 October 2015.

RESEARCH TRAVEL GRANT 2015

Denise Flett The Royal Marsden Hospital London UK, Advanced Nurse Practitioner in breast cancer care.

We will report back on the grant winners’ experi-

Travelling to: Dana Faber Cancer Institute, Boston, USA to work with Dr Ann Partridge Medical Oncologist, Director Adult Survivorship Programme.

ences and findings in a future issue of the EONS

Valentina Biagioli

Magazine. To find out what grants are available go to www.cancernurse.eu/awardsgrants/ grants.html

Research Proposal Workshop 2015, The fourth EONS Research Workshop was held in Amsterdam, the Netherlands, from 20-22 May 2015. Ten participants from six countries attended (Spain, Netherlands, UK, Sweden, Greece and Czech Republic). The workshop was facilitated by Professor Theresa Wiseman, Dr Andreas Charalambous, Dr Wendy Oldenmenger and Dr Ulrika Ostlund. Andreas Charalambous, EONS Executive Board Member

DAY 1

DAY 2

The participants were given the opportunity to present their research ideas in terms of the practice problem they were planning to explore. This gave the opportunity to all the participants to comment on each otherâ&#x20AC;&#x2122;s proposal with a critical view, and enabled the facilitators to gain some insight into the proposed projects in terms of feasibility and contribution to knowledge. The participants planned proposals in various clinical fields including intensive care, translational research, epidemiology, surgical oncology, pediatric oncology and symptom management. As the projects varied in terms of the fields of interest, similarly the methodological thoughts of how these issues could be researched also varied with the majority however, favouring quantitative and mixed method approaches.

The facilitators introduced various research methods and practices that reflected the interests of the participants. Emphasis was given to examples drawn from the facilitatorsâ&#x20AC;&#x2122; own studies as well as seminal research in relevant topics. This year the facilitators encouraged the participants to work in pairs to formulate their research question and distinguish between primary and secondary outcomes. The goal was to form research questions that were concise, feasible and, most importantly, realistic. Their work was then presented to the facilitators who made critical comments towards refining these research questions.

DAY 3 The participants received information on how to fund their studies and the ethical aspects they need

ECC2015 Vienna

Amsterdam to consider in planning and executing their projects. Several small group discussions on the participants’ projects were held in an effort to think through the details of the problem at hand and reflect these in their proposals.

EVALUATION As part of the research workshop, the participants had to provide an anonymous evaluation. The evaluation is important as it sheds light on the ways that future workshops can be improved. The participants provided positive feedback in terms of the workshop, particularly appreciating the formulation and refinement of their research proposal and the safe environment in which the workshop took place. In the article below, Ioanna Tsatsou, from Greece, answers the questions: “What have you achieved through the workshop?” “What were your expectations and were these met?” “What did you enjoy most about the workshop?” Ioanna Tsatsou (Greece) – ‘A learning opportunity which guided me to explore...’ Ten nurses with a genuine interest in research (clinical nurse specialists, clinical trials nurses and PhD students) came together at this intensive three-day course and shared their enthusiasm both for nursing research and cancer nursing. I had the pleasure and honour to be one of them. Well-

known and experienced nurse-researchers taught us and helped us to clarify, verify and understand the dynamic process of research, interactively . The primary aim of this workshop was to help cancer nurses to develop a formal research proposal based on a wide range of everyday problems faced by nurses and patients in cancer care. However, it is a long journey from thinking of a research question to actually having the knowledge and becoming well-equipped enough to conduct a study. At the beginning of the workshop, participants identified their own learning outcomes they wanted from the workshop. Then we had an opportunity to get to know each other, share our nursing experience, present our topic of interest and our clinical research problem. We all came from different backgrounds and cultures thus we presented a wide range of different clinical research questions and ideas, like symptom management of targeted therapies, anxiety in hospice care, distress of family caregivers, nutritional and sexuality assessment, biological issues such as evaluation of biomarkers and nurses’ smoking habits. Each presentation provoked a lively group discussion which was encouraged by the facilitators who kept it moving smoothly and created a wonderful flow of ideas and experiences among us all. I really enjoyed sharing my experience and knowledge in this multicultural nursing environment. The following day’s lectures were on research methodology, literature review, funding research and nursing ethics. In group discussions, led by the facilitators, we had the chance to talk about present and future plans for our research project. We evolved our project and created an individual action plan for it. By the last day, we had all created a defined, clear research question which was realistic, feasible and achievable for future research. Thinking back on my experience, I would like to say that it was very motivating and inspirational. I really feel extremely lucky to have had that learning opportunity as it guided me to explore some key theoretical concepts in cancer nursing research, to develop the skills required for writing research proposals and to demonstrate knowledge and critical awareness as key concepts in cancer nursing research. Without doubt, I would not have gained this knowledge if I had not participated in this course, which definitely met my expectations.

Rosario Caruso

Workplace stress: ‘An insidious enemy’

Stressful situations in cancer nursing are common and are increasingly impacting on nurses’ health, well-being and performance, and consequently on patients’ outcomes. Nurses need to understand what stress really is and how it can be addressed and prevented. The literature shows how stress arises in nurses from the mismatch between their perception of the demands on them and their perception of their own ability to meet those demands.1 Many studies have highlighted the detrimental role of stress on both organisational and clinical outcomes.2 For

this reason, stress is an insidious enemy that must be recognised, prevented and addressed. This is especially important in a field where the achievement of any outcomes could make all the difference, as in cancer nursing. Cancer nursing places significant demands on nurses, especially in relation

to their emotional work. Moreover, some interpersonal stressors in the patientnurse interaction, e.g. understanding and empathising with cancer patients, can significantly contribute to the emotional burden on nurses. Indeed, nurses have to face a wide variety of stressors coming from their everyday working

ECC2015 Vienna

life, such as demanding patient contacts, time pressure, work overload, sophisticated technologies, budget cuts, changing treatments, misunderstandings with colleagues and many others.3 Stress should be regarded as a continuum along which an individual may pass, from feeling of eutress, i.e. beneficial stress, to those of distress or even severe distress. Eutress refers to more positive responses, while distress describes negative aspects, which could culminate in emotional burnout or serious physiological disturbance, such as gastric disorders, hypertension or asthma. It is the transition towards severe distress that is likely to be most harmful for nurses, as it is closely linked to staff absenteeism, poor staff retention and overall nurses’ ill-health. Considering the above, nurses need to understand what stress is and how it can be managed. Job demands and job resources To better understand the nuances of stress/distress in nurses’ everyday working life, the literature shows some interesting conceptual frameworks tested in the nursing field.4-6 For instance, according to Le Blanc et al.,6 the job demands are conceptualised as the antecedent of some organisational or clinical outcomes, e.g. well-being on performance, and their relationship is mediated by the strain and moderated by the personal and/or situational resources. Considering the Job Demands -Resources model,5 the relationship between job demands and job resources is important for the development of job strain and motivation as well as predicting organisational outcomes. Job strain is a negative predictor of outcomes while motivation is a positive predictor. Moreover, job resources may buffer the impact of job demands on job strain, including burnout. The results of research that has tested the Job Demand-Resources model, using a series of structural equation modelling analyses, show that when job demands and resources are both high, we expect employees to develop strain and motiva-

Rosario Caruso explains the causes and effects of workplace stress and examines some of the ways to address this widespread problem

tion, and when both are low we expect the absence of strain and motivation. Consequently, the more detrimental situation consists in a high demands/low resources condition which results in high strain and low motivation. Job demands and resources may also be affected by employees’ perception of the working environment. Considering how important it is to know and to prevent the stress in cancer nursing, the efforts for effective stress management have to be addressed at every level of the profession, from the bedside to the management, crossing the whole nursing educational path. Educational strategies Summarising research about the preventive stress management, we can highlight the main results and suggestions, which can be used at all levels of the profession: ●● To

balance job demands with situational job resources, e.g. rewards, recovery at/after work; ●● To enhance personal resources, e.g. coping strategies, nurses’ stress perception; and ●● To support evidence-based interventions when the organisational well-being/health is poor.

It seems that post-graduate education has a positive effect on nurses’ stress perception, even if it is not sufficient to improve coping mechanisms.7 Education in cancer nursing could be useful to enhance nurses’ personal resources; however, the evidence about which educational approach is more effective is weak. Probably the most useful educational strategy is the simulation of peer group relationships, using the sharing of personal working experiences and role plays. This strategy could also be useful in the ward management to stimulate nurses’ learning behaviours. Stressful situations in cancer nursing are common, and appear to be extremely important for nurses’ health, well-being, performance, and also patients’ outcomes. A workplace change is necessary and possible to address stress and to enhance evidence-based stress management. Maybe we do not know everything about stress and its many nuances, but we know enough to take evidence-based action. *See also, staff wellbeing article, p28.

Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

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INSIDE TRACK CONFERENCE

3RD BREAST CANCER IN YOUNG WOMEN CONFERENCE 10-12 November 2016 Lugano, Switzerland Chair: O. Pagani, CH

Scientific Committee: H.A. Azim Jr, BE - F. Cardoso, PT - S. Loibl, DE S. Paluch-Shimon, IL - A.H. Partridge, US F.A. Peccatori, IT Organising secretariat: Via Turati, 29 - 20121 Milan - Italy Francesca Marangoni - fmarangoni@eso.net - Tel: +39 02 85464525

FURTHER INFORMATION AVAILABLE AT: WWW.ESO.NET

#BCYlugano

Putting e-health information at the heart of oncology nursing Irma Verdonck-de Leeuw

Just as technology has changed every aspect of our lives, it is now set to radically transform healthcare. E-health will affect the practice of every cancer nurse and health professional and have a beneficial impact on access to care and quality of care by making the health sector more efficient.

People living with cancer often have to deal with a wide range of physical symptoms and psychological, social, and existential concerns related to cancer and its treatment. These problems can negatively affect health-related quality of life (QOL). In modern healthcare, and according to the chronic care model, people living with cancer must play an active role in their supportive care, which is recognised as an integral part of quality cancer treatment,1,2 comprising management

of physical and psychological symptoms, social functioning, and lifestyle issues related to cancer recurrence. Self-management is defined as those tasks that individuals undertake to deal with the medical and emotional management of their health condition(s).3 It can be beneficial for people living with cancer in terms of empowerment and self-efficacy. E-health information sources can be helpful tools to facilitate supportive care and self-management strategies.

E-HEALTH INFORMATION E-health refers to tools and services using information and communication technologies (ICTs) that can improve prevention, diagnosis, treatment, monitoring and management. It can benefit the entire community by improving access to care and quality of care and by making the health sector more efficient, and it includes, among other things, online patient information, peer support, and professional supportive care. Regard-

ing online patient information, there is Evidence of the effectiveness of online and policy makers. However, in Europe, a rapid shift from patient brochures and professional care is increasing, but often the use of the internet varies largely, leaflets to cancer-related websites. The not (yet) available. with countries such as The Netherlands, benefits of online patient information are E-health has emerged from Web1.0 Denmark and Sweden having more than that it can be distributed quickly without (“Push”), with mainly published web90% users (persons who access the interhigh costs, updating information is easy, sites, to Web2.0 (“Share”) with published net on average at least once a week) information can be presented in several websites but also user-generated content, versus countries such as Portugal and ways (image, video, sound, text), and such as blogs, video (e.g. YouTube) and Romania with less than 65% users (Fig. information can be tailored to a patient’s social networks (e.g. Facebook, Twitter). 1). The good news is that countries with personal situation. The expectation is that we are heading low internet use are rapidly catching However, online information can also towards a Web3.0 (“Live”) as a real time up.4 There is still a major challenge with have adverse effects, e.g. if the informaco-creative web with 3D portals, avatar respect to the use of e-health, not only tion is not tailored to a patient’s cognitive representations and integrated games, regarding differences in internet use coping style. Examples of online peer education and business (www.1stwebdeamong EU countries, but also regarding support are internet discussion groups, signer.com/web-3-introduction). socio-demographic factors. Older people chat or e-mail groups, and cancer-related (cancer patients are often older) and peosocial networks. Use of online information ple with low (health) literacy skills often Benefits of online peer support include There is growing interest in e-health have the least access to health informaits availability at all times, the absence among cancer patients, healthcare protion (the ‘inverse information law’). of physical or geographical barriers, and viders, healthcare insurance companies Importantly, the goals of the EU are anonymity. Anonymity can to improve citizens’ health also be a risk, as with hosby making information availtile comments. Other risks able by using e-health tools; Figure 1. Overview of use of the Internet include lack of non-verbal to increase healthcare quality communication, and conand access by making e-health in Europe (2013). cerns about the accuracy part of health policy and coorof information shared, and dinating EU countries’ politabout privacy, confidentiality ical, financial and technical and security of data. strategies and to make e-health tools more effective, userThe benefits of online profesfriendly and widely accepted sional supportive care are: by involving professionals and ●● fewer geographical barriers, patients in strategy, design and patients often value the implementation.5 anonymity, e.g. for topics To overcome the hurdles such as sexual problems with e-health design and impleafter cancer; mentation, a stepwise, iterative ●● patients can contact a and participatory approach care provider at a time of is needed which includes all their own convenience, key stakeholders: people living and waiting lists can be with cancer, care providers, avoided. healthcare insurance companies and policy makers. EssenThe risks of online tial in this is the involvement professional supportive care of key stakeholders, continuare: ous evaluation and a close rela●● lower adherence; tionship between development ●● loss of contact with a care and implementation. provider; ●● concerns about privacy; ●● confidentiality issues; and Details of the references cited in this ●● security of data. article can be accessed at www.cancernurse.eu/magazine

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Developing and testing supportive care interventions Manuela Eicher

Cancer patients and caregivers need supportive care tailored to their needs. Many resources, including guidelines, have been developed focusing on the best interventions for patients and

The Multinational Association of Supportive Care in Cancer (MASCC) defines supportive care in cancer as the â&#x20AC;&#x2DC;prevention and management of the adverse effects of cancer and its treatment. This includes management of physical and psychological symptoms and side-effects across the continuum of the cancer experience

from diagnosis through anticancer treatment to post-treatment care. Enhancing rehabilitation, secondary cancer prevention, survivorship and end of life care are integral to supportive care.â&#x20AC;&#x2122;1 One of the main objectives of supportive care interventions is to alleviate symptoms and complications of cancer and to reduce or prevent toxicities of treatment. Thus,

supportive care interventions target different patient outcomes. In addition, they focus on communicating effectively with patients about their disease and prognosis, enabling patients to tolerate and benefit from active therapy more easily, easing the emotional burden of patients and caregivers and helping cancer survivors with psychological and social problems.1

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caregivers to deliver effective, feasible and sustainable cancer care.

Supportive care must be tailored We know that patients and caregivers have highly individual supportive care needs and therefore require targeted and tailored interventions. According to international standards, all patients should be screened for their needs on an ongoing basis and have access to information, emotional support and symptom management, combined with adequate communication. Many patients will need additional information, education and encouragement to seek additional help. Some of them will require specialised professional intervention and a few of them complex care.2 Supportive care interventions should be designed to cater for individuals’ unique needs, to achieve longterm positive outcomes for both cancer patients and their carers by supporting them to adopt novel behaviours to manage health concerns better, and/or reject unhelpful ones. Since such interventions have to be addressed to the right patient in the right way, this goal might also require behaviour change for the health professionals providing this.3 Many resources have been developed to guide effective supportive care interventions. An example in oncology nursing is the ‘putting evidence into practice’ guidelines (PEP), initially developed by the Oncology Nursing Society in the United States. Recently they were further developed and adapted for Europe by the European Oncology Nursing Society. The Euro-PEPs (http://www.cancernurse.eu/ education/europeps.html ) are available in different European languages, and give nurses a quick and evidence-based overview of supportive care interventions for different symptoms and supportive care needs. Overall, a large number of inter-professional guidelines have been developed to improve the quality of supportive care by organisations such as the Multinational Association of Supportive Care in Cancer, the European Society of Medical Oncology and the US National Comprehensive Cancer Network.

Table 1. Framework for the development and delivery of psycho-educational and supportive care interventions (adapted from Schofield and Chambers) Task

Comment

Target

Different cancer types, stages, treatments and time points require distinct management approaches

Tailor

Assessment of individual’s unique needs to provide appropriate management

Self-manage-

Coaching in problem solving and strategies to manage disease,

ment

side-effects and social and emotional aspects

Low intensity

Integrating targeted/tailored health professional contact with other mechanisms, e.g. technology, to increase “dose” while keeping costs reasonable

Training

Adherence to intervention protocol can be achieved by training in intervention delivery, supervision, auditing and feedback

Evidence base

Highest level of available evidence to inform the content and delivery mechanisms

Stakeholders

Engaging patients, clinicians and other end users in an iterative process of design, testing and feedback to facilitate acceptability and adoption

Supportive care interventions are complex Many of the guidelines have been adapted to different clinical settings, and intervention studies have been conducted to improve supportive care needs and symptom management. Despite these initiatives, many cancer patients still have unmet supportive care needs and, overall, we are not seeing significant reductions in symptom intensity or prevalence. A review of studies investigating unmet supportive care needs in cancer patients showed that the number of observational studies published increased substantially between 2000 and 2010, while the number of intervention studies has remained low, and do not show a clear impact on reducing the level of unmet needs.4 A large cohort study recently described changes in pain intensity and symptom prevalence in patients with chronic dis-

eases. Between 1998 and 2010, proxies reported symptom prevalence during the last year of life of patients. The cohort comprised a sample of 1546 cancer patients; the authors did not find any significant changes in the frequency of individual symptoms such as pain, depression, dyspnea, severe fatigue and frequent vomiting.5 Thus, there is a need to continue to develop approaches for the development and testing of such supportive care interventions. There is evidence that a methodology that reflects the complexity of the intervention provision and reception might be more promising. A systematic literature review of complex nursing interventions reducing symptom burden in adult cancer patients evaluated 11 trials. Despite the studies being heterogeneous, the interventions in all these studies had patient education, symptom assessment and coaching in common.

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Some interventions failed to show signiﬁcant effects, whilst others signiﬁcantly reduced aspects of symptom burden by 10–88%.5 Development and testing of complex supportive care interventions Schofield and Chambers have published a framework for the development and delivery of psycho-educational and supportive care interventions that takes the complexity of supportive care interventions into consideration.3 It describes seven steps to guide researchers and clinicians to deliver effective, feasible and sustainable interventions (Table 1). The authors used the well-known and frequently used Medical Research Council framework for developing and evaluating complex interventions.6 This framework provides guidance on the steps to consider when designing and testing a complex intervention (see Fig. 1) and a set of methodological recommendations, e.g. designs and methods for data gathering and analysis (see www.mrc.ac.uk/ complexinterventionsguidance). In the last decade, this framework has been adopted increasingly to develop and test supportive care in cancer interventions. Examples of the development and testing of complex supportive care interventions Gray et al.7 developed a supportive care intervention for colorectal cancer patients in the community by conducting semi-structured interviews with patients (n=28), cancer specialists (n=16) and primary care health professionals (n=14) in North East Scotland and Glasgow. They developed a single, one-hour nurse home visit 6–12 weeks after diagnosis, and a telephone follow-up one week later. Their pilot testing phase with patients (n=12) demonstrated the feasibility of intervention delivery. In one of our own studies, we recently tested the feasibility and piloting of a complex intervention to facilitate resilience and meet unmet needs in newly diagnosed cancer patients in an outpatient setting.8 To test the fea-

All patients should be screened for their needs and have access to information, emotional support and symptom management, combined with adequate communication

Fig. 1. Key elements of the development and evaluation of complex interventions (Ref. Medical Research Council framework) Feasibility and piloting Testing procedures Estimating recruitment / retention Determining sample size

Development Identifying evidence base Identifying / developing theory Modelling process and outcome

Evaluation Assessing effectiveness Understanding change process Assessing cost effectiveness

Implementation Dissemination Surveillance and monitoring Long term follow up

sibility, we applied a non-comparative phase II design – usually applied in pharmacology trials – to test the best “dosing” of this complex intervention. Besides statistical analysis of the outcomes, the study involved clinicians providing the intervention and patients receiving it to further investigate the acceptability of the intervention and adherence to the intervention protocol. A management summary of the early results of this recently finished trial are available on the EONS website (http://www.cancernurse.eu/ awardsgrants/eons_research_grant.html). In Germany, Patrick Jahn and his team evaluated the Self Care Improvement through Oncology Nursing (SCION)-PAIN programme, using a multi-modular structured intervention to reduce patients’ barriers to self-management of cancer pain.9 Cancer patients (n=263) were cluster-randomised on 18 wards in two

German university hospitals. Patients in the intervention group showed significant reduction of patient-related barriers to pain management and improved adherence to pain medication one week after discharge from the hospital. All the above intervention studies showed positive results and might therefore improve the impact on supportive care needs and symptom burden of patients in the future. These examples also remind us that the development and testing of supportive care interventions should always involve clinicians and patients at the early stages of development to increase the chance of normalisation in clinical routines in the future, and in turn, optimise patient care.

Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

The shortage of nurses is a ticking timebomb ECCO president, Martine Piccart, introduced the health workforce debate as one of the key “timebombs” topics discussed at the oncopolicy forums at ECC2015. She highlighted the challenges related to the financial crisis as well as the skill mismatch and the unequal distribution of health professionals, and she pointed to solutions both from an organisational and policy perspectives. Interview by Jim Boumelha.

With the European Commission forecasting a health workforce shortage of one million in 2020, something you describe as a “timebomb”, what in your view are the reasons for this crisis? There are several reasons. Firstly, we have an ageing population and with this an increasing prevalence of diseases, including cancer. Secondly, the workforce itself is ageing – in 2010 more than 50% of physicians were above 55 years of age. Added to this, not enough young people are entering the medical profession. Furthermore, since the financial crisis, some countries (Greece, Bulgaria, Romania and Hungary, amongst others), are seeing swathes of doctors leaving for Western European countries such as Germany, Belgium and the UK. Taking all these factors together,

we are facing a serious problem of demand for healthcare outweighing supply in some countries and regions of Europe. Nursing is a particular worry as the shortage is expected to reach 500,000 by 2030. Developing skills is also an important component, what types of skills would be needed and where? How would they provide value-for-money care? Going back to the issue of migration of health professionals, we are seeing a resulting discrepancy in skill mixes between countries and it is impossible to say that all configurations will lead to the same quality treatment and care standards and patient outcomes. It is important to have reliable data on

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the skill mix in oncology in member states so that we know which skills are underrepresented and can address this accordingly. As the science and practice of oncology continues to evolve, and as technology opens up new ways of delivering treatment and care, the roles of cancer professionals will inevitably also change. Multidisciplinary team working is becoming recognised as an essential component of high quality and cost-effective cancer care, for instance. Formal implementation of multidisciplinarity may be realised through the accreditation of cancer units that meet certain quality indicators pertaining to organisation of care. What solutions do you advocate both from an organisational and policy perspective? As mentioned above, an optimal organisation of professionals along the patient pathway is crucial. This may vary from tumour to tumour, but once we have quality indicators for care organisation in place, we will then be able to combine this with demographic and epidemiological data to help forecast oncology workforce needs.

ECCO President Martine Piccart addresses ECC2015 in Vienna

It is important that we have reliable data on the current oncology health workforce and on workforce growth, as at present, internationally comparative data is lacking. From a policy perspective, it will be important to promote the health of workers as they age and to continue developing their skills across their working life. It will be crucial to be able to offer attractive working conditions, especially in those professions that are desperately needed but which are deemed unattractive due to long working hours and low pay. What role should the European Commission play to help ensure an oncology workforce equipped to deliver sustainable, high-quality cancer care? The European Commission has ensured that we have a common market in Europe for health professionals through the Directive on recognition of professional qualifications, which covers doctors, general care nurses, midwives, dentists and pharmacists. However, not all oncology professions are included in the scope of this directive. The European Society of Medical Oncology has worked hard to ensure recognition of their profession. However, other oncology professions also need to be recognised, especially those where there is a high mobility such as oncology nurses. The

situation is complicated by the complexity of cancer treatments – indeed, in some countries nuclear medicine and radiology are separate specialties but in other countries they are combined into a single specialty. A harmonised approach to recognition of qualifications and definition of specialisations should lead to improved mobility of appropriately trained oncology professionals and ultimately high quality cancer care being delivered across the board in Europe. We are pleased that the health workforce is on Europe’s policy agenda and that Europe is investing in a Joint Action on Health Workforce Planning and Forecasting. We look forward to the results and follow-up activities of this important initiative and hope that the oncology workforce will feature in any further Joint Action as an area for improved collaboration across member states. What about the role of the oncology professionals’ organisations? Oncology professionals’ organisations can help by attracting medical students to the profession and by providing specialist educational courses throughout their professional journey in order to ensure our oncologists deliver the highest quality care. Many of ECCO’s member societies already offer such educational courses. Another important role for professional organisations is to collect and analyse data and information on their respective professions to inform health workforce planning and policymaking. What advice would you give to EONS to optimise the role of its member organisations in tackling this crisis? What do you think should be changed? We notice some particularities in the oncology nursing sector – serious shortages in some countries and a less dynamic growth of the nursing workforce than the physician workforce. This is particularly worrisome as we are expecting nurses to take on some medical tasks and skills from doctors. In some countries, nurses are already fulfilling the role of radiation therapist and operating the machines. Action needs to be taken to make oncology nursing an attractive profession and to ensure nurses receive the highest quality training. Recognition of their expertise by law would certainly improve the attractiveness of the profession, raise quality of care across the board in Europe and increase patients’ confidence in the care they receive, no matter from which country they receive their treatment.

Nursing care models for older people with cancer in clinical settings Nursing care should handle cancer treatment in the light of the ageing process, physically and existentially, by combining knowledge from both geriatric and oncological nursing.

Ingalill Rahm Hallberg

There has been a demographic transition all over the world, including in European countries. The transition is however much faster in Asian countries, and is due to a variety of factors. The most important explanation is the change from large numbers of children in a family to only one or two children. This decrease in the birth rate together with improved longevity means that most countries have some very large cohorts of people born during or right after World War II who are now reaching retirement and older age. So, while the birth rate seems to be stable and low, often below 1.7, in European countries, many people have already or will soon reach the age where functional decline and chronic diseases including cancer develop.

AGEING PROCESS This change of the demographic composition of a population is often discussed as a threat and a challenge for societies, while it is in fact a story of success. The mortality among newborns has decreased substantially and longevity has

improved, and seemingly is still improving. Most people can foresee living a long time after retirement. This very long period, however, is marked by developing diseases and functional decline. Getting cancer may take on a different meaning depending on when, in the aging pro-

cess, cancer develops. Right after retirement, normally around 60â&#x20AC;&#x201C;65, most people are healthy, mobile and live an active life and also report a high quality of life.1 Their expectation may be to now do all those things they have not had the time or opportunity to do before, and also to remain healthy as long as possible. Slowly diseases occur, and it is mainly chronic diseases, of which cancer is one. Health complaints Figure 1. of various kinds also develop â&#x20AC;&#x201C; chronic pain, communication difficulties, mobility restrictions and so on. Quality of life can still be very good, but recognition that life is not endless is coming closer. In longitudinal studies, it can be seen that, during this process from retirement to death, the number of diseases increase and often people have more than one chronic disease as Prevalence of clusters of complaints in people they grow older. Medical treatment 75-105 years of age. Behind each cluster are also increases significantly. The several complaints belonging to that cluster. Those paradox is, however, that mobilcontributing most to low quality of life are complaints ity, working ability and quality of related to mobility, psychosocial condition and life have improved over the years.2 communication. These will add to the problems Thus the picture is mixed, seemarising due to cancer and its treatment. ingly life is better, but costs in terms of health care are higher.

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The real blow to quality of life is when the person becomes increasingly dependent on others due to limitations in functional ability, and this is the time when it becomes obvious that life has an end.3 At this stage, the person is in most cases suffering from several diseases and undergoing complex treatments, and their reserve capacity to handle physiological challenges is restricted – the person is fragile. This is the context in which cancer treatment and nursing care is to be provided.

EXISTENTIAL CRISIS In essence, this means that getting cancer may take on a very different meaning, depending on when it develops in this aging process. It has been reported that people around 75–80 years old have a significantly poorer quality of life compared to younger age groups with cancer, indicating that the existential blow may be harder at a stage where people still hope for a healthy and active life. Studies have shown that developing cancer after the age of 65 means a sudden awareness of the finiteness of life, painful insights into losses but also awareness of possibilities.4,5 Similar findings report turning points marking old age as: losing control, disturbed family balance, and life and death suddenly becoming apparent at the same time as hope and enjoyment of life becomes vital.6 Haug et al.7 report the need for maintaining the activities of a normal daily life, naming and handling decline and loss, and space for making existential meaning. In addition, the older the person is, the more they suffer from health complaints, and they thus are more fragile and thus they are more sensitive to challenging cancer treatment. In summary, this means that nursing care should take into account that the person diagnosed with cancer is a physically fragile person in an existential crisis. The cancer experience may take on a different meaning depending on other diseases, other complaints related to health per se, other diseases and treatments related to the cancer and the aging process. It is also essential to listen and to ask the person about desires for the years to come. Nurs-

ing care should handle the cancer and the cancer treatment in the light of the aging process, physically and existentially, integrating the knowledge from geriatric and oncological nursing. This is a healthcare situation in which geriatrics and oncology should go together and merge each other’s expertise in clinical practice. In particular, there are two developments in geriatrics that may be useful in oncological care for older people throughout the process of diagnosis, treatment and aftercare. The first is applying a Comprehensive Geriatric Assessment (CGA) that in turn informs the care and treatment plan.8 The second is organising care in a Case Management (CM) model, modified to suit the person depending on where s/he is in the process of disease and treatment.

ASSESSMENT MODELS CGA has been practiced in geriatrics for quite a while, and is a multidimensional and interdisciplinary process to determine frail older persons’ medical status (nutrition, co-morbidities and severity, medication etc.) and mental health (cognition, mood anxiety, fears, etc.), as well as their functional capacity (activities of daily living, gait, balance, activity, exercise, etc.), social circumstances (informal support, social networks, formal care eligibility, etc.) and environmental conditions. This assess-

ment is supposed to be the basis for a coordinated and integrated plan for treatment, rehabilitation, support and long-term follow up. There are plenty of valid measures available to carry out a comprehensive geriatric assessment. It may well be that some more items need to be included due to cancer and cancer treatment. Case management is a way to structure the care and responsibility in relation to a patient. The model needs to vary in relation to patient groups, the competence in the team and where in the organisation the case manager is placed. The model was developed to hinder fragmentation and duplication of programmes and contacts, in particular when the person has complex health needs and is at risk of ‘falling between two stools’. It is slowly implemented in geriatric care and is defined as a collaborative process of assessment, planning, facilitating, care coordination, evaluation and advocacy for options and services. These must meet a patient’s and family’s comprehensive health needs through communication and available resources to promote a high quality, cost-effective outcome (the Case Management Society of America). The models can be applied with different levels of responsibility and interventions included.9 The minimal model is mainly about case findings, assessing

Figure 2 Summary and points to consider providing nursing care for older people with cancer and cancer treatment Life should be in focus not death. Acknowledge: ●● the frailty, the variation and the stages of the ageing process ●● the existential crisis not only related to cancer but also to the facts of life – it will end somehow ●● balance is easily interrupted ●● pro-active approach, closely monitoring depending on frailty ●● the older person has to balance closeness to loved ones against being a burden to them.

patients’ needs and planning and determining which organisation should take the responsibility for providing care. This model is suitable for insurance companies but not so relevant for nursing care for patients with complex health situations. In addition to tasks included in the minimal model, the coordination model includes being the patients’ advocate, working with them and their support system and also continuous assessment and re-planning. In addition, the case manager may be involved in the care process and provide interventions of various kinds. This model is suitable for cancer patients with a complex health situation and perhaps during the treatment process until discharge. The comprehensive model also includes being an advocate for developing resources, monitoring quality, public intervention and crisis intervention. This model is perhaps most suitable for very vulnerable patients with a complex health and treatment situation, for instance palliative care or end of life care. In most studies evaluating the case management model in geriatrics, registered nurses trained for the role have been the case managers. When selecting case managers, the professional competence needs to be considered and related to the tasks to be included. The competence required also depends on the knowledge in the team behind the case manager, which should be able to provide advice and guidance and also education to strengthen the case manager’s competence. So far, the research outcome of the case management model has been inconclusive, mainly due to the fact that it is not one model – context and target groups differ. Patients and families, however, favour this model, but more research is needed in the same context and the same target group to establish its effectiveness in providing high-quality care to a vulnerable group of cancer patients. Thus, in my view, this model, combining CGA and CM is worth trying in geriatric oncology nursing care. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

The importance of staff wellbeing and the patient experience We have a crisis in nursing in the UK and in some other parts of Europe – more patients with increasingly complex needs but a shortage of nurses, with more nurses leaving the profession because they don’t believe they can deliver the high quality care they came into nursing to give to patients and /or they burn out. This has important implications for care quality and patient safety.

Jill Maben

To deliver safe care we need to retain staff and support them, help protect them against burnout. In 2010, colleagues and I argued that “really relating to patients takes courage, humility and compassion, it requires constant renewal by practitioners and recognition, re-enforcement and support from colleagues and managers. It cannot be taken for granted” (Maben et al 2010). Staff need a good work environment to flourish and enable them to give good care, to give safe care. Ten years ago I completed my PhD: I wanted to know if we were preparing student nurses to be resilient and whether they could nurse in the way that they had been taught. In a questionnaire at the end of their course, my study asked nurses: “As a qualified nurse, what do you anticipate will be your ideals for practice? That is, if you were able to choose how to prac-

tice, what would be the kind of care you would like to give?” I then followed up 26 of these students as they became qualified nurses – 22 women and four men. I analysed the fate of their ideals and values over this period of time. I wanted to understand what the experience was like for them and how this might change over time. Newly qualified nurses emerged from their education with a strong set of values and ideals. Patient centred holistic care, giving high quality care, using their nursing knowledge and research/evidence-based, safe care. Effectively, the study demonstrated that over time these nursing ideals and values in most cases eroded and I identified three groups: 1. Sustained idealists 2. Compromised idealists, and 3. Crushed idealists.

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and you are dissatisfied.... you’re just too busy to show people that you’re being compassionate and that’s so important to patients, you just need to remember how every little thing you do is so frightening to them.... But when you’re tired, I don’t think it’s that I care any less sometimes I just haven’t got the energy to show it.’ [Janet: Interview 1]

Sustained idealists – those who because of support, good role models, good staffing and skills mix and a philosophy of care that promoted compassionate care were able to retain their ideals – numbered just four out of 26 newly qualified nurses. The majority’s ideals became crushed or compromised. Those (n=14) who were compromising their ideals on a daily basis were suffering most as they were still trying hard to implement their ideals, whereas the eight whose ideals were crushed were already leaving nursing just 15 months after qualifying (Maben et al 2007). One interviewee said after just six months: “Burnout - I can see it happening already (laughs) I think it’s just the fact that it’s a very stressful environment… you can see yourself getting worn out and your energy level depleting

What we know is that: ‘Burnout strikes precisely those individuals who had once been among the most idealistic and enthusiastic… and they would be more susceptible to the most severe burnout. We have found over and over again that to burn out, a person needs to have been on fire at one time. Stressed and burnt out staff cannot deliver safe and compassionate care.’ (Pines and Aronson 1988). Stressed and burnt out staff cannot deliver safe and compassionate care, and staff shortages and high turnover is also a threat to safe care. So, how do we support staff better and how do we get happy staff: there is an evidence base that suggests happy staff means happy patients. In 2008, I led a nationally funded NIHR study examining relationships between staff wellbeing and patient experience that had eight case studies – four acute hospitals and four community sites. Our study was one of the first to examine this in the UK NHS and to link patients at the team and individual level. Our three-year study found that: ●● There is a relationship between staff wellbeing and (a) staff-reported patient care performance and (b) patient-reported patient experience. Staff wellbeing is an important antecedent of patient care performance. ●● It is the experience of healthcare staff that shapes patient experiences of care for good or ill, not the other way round. ●● Seven staff variables (“wellbeing bundles”) correlate positively with patient-reported experience: 1. Local/work-group climate 2. Co-worker support 3. Job satisfaction

4. Organisational climate 5. Perceived organisational support 6. Low emotional exhaustion, and 7. Supervisor support (Maben et al 2012). So, where patient experience is low, so too is staff wellbeing and vice versa. In terms of interventions to support staff, there are a variety of approaches: restorative supervision; buddying staff; emotional resilience courses. Schwartz Rounds I am currently working with Jocelyn Cornwell at the Point of Care Foundation to evaluate Schwartz Rounds in the UK. Kenneth Schwartz died of lung cancer in his 40s. He noticed that some caregivers (doctors and nurses) were able to connect with him and share something of themselves and their lives, whilst others did not. He also noticed that some staff could do it one day and not another, which helped him think what it must be like to be a caregiver in an oncology setting. He spoke of staff who connected with him and shared his pain ‘making the unbearable bearable’. His oncologist and family members established the Schwartz Centre for Compassionate Healthcare in his memory and set up Schwartz Rounds: a multidisciplinary forum, where staff from across the organisation come together to discuss the non-clinical aspects of caring for patients, i.e. the emotional, ethical and social challenges. Rounds typically take place once a month and provide a safe and confidential environment for staff to talk about their work. There are over 300 organisations in the USA and 123 in the UK, now running rounds. Schwartz Rounds might be one way; role modelling and supporting our junior colleagues is another – but most importantly, my research tell us that it is critical that we do support nurses, particularly oncology nurses who encounter patients facing a cancer diagnosis, treatment and potentially death, all stressful experiences that could lead to burnout and staff leaving the profession.

Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

Survivorship – ‘Small things make a big difference’ Jane Maher, Chief Medical Officer at Macmillan Cancer Support, made a key presentation at an oncopolicy session at this year’s European Cancer Congress on the pressing issues of cancer survivorship. She drew on the UK National Cancer Survivorship Initiative and presented examples of integrated services and approaches to follow up care. More people are living with cancer today than ever before. In the UK there are 2.5 million cancer survivors, representing an increase of 400,000 over just the last five years. The biggest increase is in those over 65, and in those who are long-term survivors. The majority of patients are now in the survivorship phase, with half going to live more than 10 years after their diagnosis. But surviving cancer does not necessarily mean living well. Research around the world shows that one in four are now living with the consequences of their treatment, and one in five may have unmet needs. Cancer affects many aspects of people’s lives. Over 80% of cancer patients will be affected financially and 37% are less likely to be employed than the non-cancer population. Cancer does not occur on its own. Increasingly, it co-exists with other conditions either at the time of diagnosis or later, in line with the distribution of co-morbidities in the UK population. The focus should therefore be not just on the big consequences of treatment, such as second

malignancies, fractures or cardio-vascular disease, but on a much deeper understanding of what happens after cancer treatment – is this person able to function in normal society? For example, one in five patients with colorectal cancer will have poor bowel control following their treatment, yet we don’t necessarily measure it and we don’t apply the simple things that could make a difference. We know that our cancer care system cannot cope with the needs of today, let alone the needs of the future. We have to think about new ways of working – we cannot just keep putting more and more specialists in, we’ve got to think about how specialists and generalists can work together. The first step is to recognise that not all cancers are the same. We started thinking about three sorts: 1) those cancers where the majority of people will live a decade 2) those where most people will die within a year and survival is short-term, and 3) that growing group of people who live for years, not decades, and have incurable but often treatable cancer.

The first group include cancers at stage 1 of most illnesses – testicular cancer, most Hodgkin’s disease and the majority of breast cancer patients. This group will make up 38% of the incidence and 56% of the prevalence. The third group, including brain, stomach, liver, mesothelioma and advanced disease in most cancers, makes up a third of the incidence, but only 10% of the prevalence, because the majority die. The middle group of intermediate patients, which include hormone-sensitive, metastatic breast and prostate cancer, ovary and blood cancers where you have a relapsing-remitting multiple decision-making over many years, that will be the increasing group. The reality is that the new drugs that are going to be given primarily in the poor health group are not going to take patients to group one. They are going to take them into group two. So when we think about the focus for intervention, it will be different for the three groups. For the first, we will be thinking less about treatment and more about recovery and late effects. In the

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bottom group, we are going for early diagnosis, new treatment and better palliative care for those who do not respond. As for the middle group, we will have to learn from our colleagues in chronic illness management about how to deal with things differently when it is not just an acute episode and it is not just dying. We learned in the National Cancer Survivorship Initiative that if we support cancer patients better, with information and specialist support, they are more likely to self manage after their anti-cancer treatment. People who are allocated a nurse specialist are 49% more likely to have been given information about their cancer and about what to do afterwards. If patients have some sort of multi-domain assessment – the distress thermometer, the holistic needs assessment, any multi-domain questionnaire – they are more likely to have better conversation with any health professional they see, and more likely to address issues that are important to them. It was also found that if patients have a proper recovery package during and towards the end of their anti-cancer treatment, involving assessment and care planning, a treatment summary record, and some form of educational intervention, then a significant percentage can manage without hospital-based follow up. This requires a proper organisation of tests to be done at a distance and open access back into the system. Finally, physical activities can significantly reduce some of the most important consequences of anti-cancer treatment and improve both quality of life and survival. The public still think that if you have cancer either you are cured or you die. It is more complicated. As oncologists we have to think about after-effects or co-morbidity as the cancer population accumulates costs, long after the actual cancer has apparently been successfully treated. We have to find new ways of working and engaging with our generalist colleagues, but also realise that small things can make a big difference if they are spread systematically.

Beyond cancer: the fears of cancer recurrence After treatment ends, one of the most common concerns survivors have is that the cancer will come back. Gozde Ozakinci, lecturer in health psychology at the University of St Andrews, Scotland, told participants at the European Cancer Congress about the state of research around fears of recurrence, and how health professionals got together to launch Forwards, a special interest group. Fears of cancer recurrence were identified either as the top concern or among the top five concerns across different cancer types in a comprehensive systematic review published in 2013.1 It appears that these fears are stable experiences for some cancer survivors, and do not go away with time. One of the important predictors of fears of cancer recurrence is age – younger survivors report greater fears of cancer recurrence.2 Although there is limited evidence on how these fears correlate with health behaviours and treatment-related decision-making, e.g. fertility preservation, there is increasing interest in exploring this link. An increasing number of interventions to help survivors manage their fears are currently being developed and tested in different countries. In an unpublished qualitative study of survivors of breast and colorectal cancer conducted by this author, the experiences of survivors with low, moderate, and high levels of fear of cancer recurrence were explored. Common to all groups was that lingering symptoms, e.g. aches and pains, as well as news about cancer in the media could act as triggers. Additionally, cancer survivors reported that when healthcare providers communicated about their symptom experience, this impacted on

their fear levels, either increasing or reducing them. Researchers and clinicians are increasingly focusing on fears of cancer recurrence, because of its impact on survivors’ quality of life. A group of experts on fears of cancer recurrence, gathered at a twoday colloquium held at the University of Ottawa last August and launched the “Forwards” group as part of the International Psycho-Oncology Society (IPOS). The experts, who came from Australia, Belgium, Canada, Holland, and the UK, as well as a representative from the American Cancer Society and two patient representatives, agreed on a definition of fears of cancer recurrence as “Fear, worry, or concern about cancer returning or progressing”. This definition also encompasses the ‘chronic’ nature of the disease that some patients experience. Future research needs to tackle issues around multiple measures for fears of cancer recurrence, the definition of ‘clinical’ levels of fears, development of theory-driven psychological interventions and the delineation of how fears and health behaviours impact each other.

Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine