N U R S I N G
T H E
H E A R T
P A T I E N T
C A R E
Rehabilitation Patricia A. Ganz: Where survivorship care really started
Cancer Rehabilitation Programmes in Italy
Survivorship: more than just being (a) patient
Interview by: Jim Boumelha
by: F. De Lorenzo, E. Iannelli and P. Varese
by: Jan Geissler
EDITORIAL Editor-in-Chief: Clair Watts
Survivorship: Living with or beyond cancer by Natalie Doyle
LATEST NEWS Editorial Assistants: Catherine Miller, Rudi Briké Art Editor: Jason Harris EONS Secretariat: Avenue Mounier 83, 1200 Brussels, Belgium Phone: +32 (0)2 779 99 23 Fax: +32 (0)2 779 99 37 e-mail: firstname.lastname@example.org Website: www.cancernurse.eu
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EONS acknowledges AMGEN (Europe) GmbH,
AstraZeneca, Merck KGaA, GSK, Novartis, Nycomed, Pfizer Oncology, Hoffmann-La Roche, Sanofi-Aventis Groupe and Spepharm SAS France
A message from the Board Starting a new EONS tradition I want to be an excellent nurse Seeing is believing Sexuality and the cancer journey Putting evidence into practice “Made me nuclear” message of hope Why not an Alliance for health? Sailing with Ellen
Where survivorship care really gets started
for their continued support of the Society as
Returning to work after cancer
Reducing cancer-related fatigue: the impact of CAM
Transition to self reliance
Survivorship: more than just being (a) patient
Cardiotoxicity and anthracycline in childhood cancer survivors
Cancer rehabilitation programmes in Italy
Print run: 2000 copies Electronic version accessible to 20,000 EONS members Design and production: © 2011 HarrisDPI. www.harrisdpi.co.uk Cover Illustration:
The views expressed herein are those of the authors and do not necessarily reflect the views of the European Oncology Nursing Society. The agency/company represented in advertisements is solely responsible for the accuracy of information presented in that advertisement. The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of
Author profiles and references can be found for this addition of the magazine at http://www.cancernurse.eu/ communication/eons_magazine.html
any translated materials contained within this edition of the EONS Magazine. © 2011 European Oncology Nursing Society
The aim of the EONS Magazine is to provide a written resource for European nurses working in cancer settings. The content of the articles is intended to contribute to the growing body of knowledge concerning cancer care. All correspondence should be addressed to the Editor-in-Chief at: email@example.com
Survivorship Guest Editorial
Living With or Beyond Cancer
iving with or beyond cancer is becoming a reality for more and more people across Europe. Each individual country continues to strive for improvement in their survival statistics and policy or practice guidelines, as we see from the “ask the expert” interviews. Alongside this, we must consider the survivors themselves. What do they need and how can we, as nurses working within multi-professional teams, best support them to live their lives? As Jan Geissler says in his personal account, we can learn from the patients themselves who have much to contribute to improve “overall survivorship” rather than just “overall survival”. The example set by FAVO in Italy demonstrates that the combined voices of patients and professionals can make a difference to government policy and the national research agenda. Sieswerda and van Dalen’s article about cardiotoxicity in survivors of childhood cancer shows us that more research is needed into the protective measures that can be used during treatment and the screening follow-up procedures necessary to ensure primary and secondary prevention of the conse-quences of cancer treatment is as good as it can be. However, the transition to survivorship is about more than the biomedical issues. Targeted support from health care professionals is essential. Richard Towers describes the need to promote independence when people present with physical, psychological and social challenges. By using person-centred and empowering counselling approaches such as Solution Focussed
Brief Therapy or Motivational Interviewing, he suggests ways to help without creating dependency. Diana Greenfield and Catherine Hayden echo this premise in their article about returning to work. The traditional role of the occupational therapist uses core functional and cognitive assessments to help with goal setting and graded activity to allow for successful structured vocational rehabilitation. One of the biggest barriers to successful rehabilitation for anyone who has had treatment for cancer is fatigue. This prevalent symptom is rarely ameliorated by pharmacological interventions. Alex Molassiotis and his team demonstrate in their comprehensive review how some complementary and alternative interventions might offer some hope. For old and young, the road through cancer treatment can be tough and is rarely, if ever, described as fun. The Ellen MacArthur Cancer Trust was set up in 2003 to address many of the aspects needed for the successful transition into survivorship, for example empowerment, independence and return to a meaningful, if sometimes different, life. The Trust was also set up to ensure young people could have fun. I hope you will enjoy this issue and take inspiration from the groundbreaking work described by the authors to influence not only your own practice but also local and national policy wherever you live and share your successes and challenges with your international colleagues.
Natalie Doyle is the Nurse Consultant for Living With & Beyond Cancer at The Royal Marsden NHS Foundation Trust and President Elect of UKONS. She is actively involved in the National Cancer Survivorship Initiative.
A Message from the Board For the first time ever, EONS Board met outside of Brussels and was hosted last May by Baskent University in Ankara, Turkey. The idea to have one meeting every year somewhere in Europe, was proposed at the 2010 Advisory Council in a bid to incorporate local clinical visits with meetings of local groups to help build better relationships and learn more about local cancer nursing issues. Our meeting in Ankara was a pilot. Board members went immediately to work, meeting officials of Baskent University, including the rector and the head of the
clinical faculty, followed by a visit to the Hacettepe University Oncology Institute and Hospital in the heart of the city. The tour included outpatient treatment rooms, the smoking cessation clinic, brachytherapy treatment facilities as well as in-patient wards. Board members were impressed with the knowledge, care and dedication of the staff. The evening was more of a friendly get-together with Turkish Oncology Nursing Society Board members joining in an excellent dinner where our hosts displayed graceful hospitality and warmth. The Board also worked through
their usual agenda, discussing the approval of a new project that will deliver a fungating wounds toolkit, the offer of free access to EJON in 2011 for EONS members, planning for the 2012 ESO/EONS Masterclass and developing a joint session with MASCC members in time for their 2012 congress. On the whole the experience was highly successful. The efficient schedule and all the new knowledge gained in a very short time, made everyone start thinking about the next meeting in 2012. The Advisory Council is finally on the move around Europe! Ulrika Östlund, Board Secretary
Record Abstracts at Global Supportive Care Symposium The 2011 Multinational Association of Supportive Care in Cancer/ International Society of Oral Oncology (MASCC/ISOO) symposium was a truly world affair gathering in Athens, Greece on June 23rd, 850 participants from 57 countries. The purpose of the symposium was to share ideas and explore new methods to minimise cancer-induced side-effects, the symptoms and complications of cancer treatments and psychosocial issues facing cancer patients and their families. Topics included cancer pain, cutaneous toxicity and mucositis, spirituality and psychological issues, neutropenia and infections, supportive care in radiotherapy, pharmaceutical issues in supportive care, nausea and vomiting, survivorship and future trends in research and supportive care. A feature of this year’s meeting was an increase in the number of proffered papers presenting the latest in the science of supportive care, a trend likely to continue at the next meeting. A record 900 abstracts were presented as invited podium and poster.
The symposium opened with the awards ceremony led by MASCC president, Professor Dorothy Keefe, announcing and congratulating the winners. The MASCC Distinguished Service Award was awarded to Professor Linda Elting, who has been an active member of MASCC for over 20 years. The Cynthia N. Rittenberg Award was given to the nurse who received the highest priority score among travel scholarship awardees. The 2011 recipient is Galina Kuznecova, RN, from Latvia whose abstract investigated lymphedema risk and prevention in breast cancer patients. In all, nine MASCC travel scholarships were awarded, five from Europe, one from South America and three from Africa. Four recipients were nurses, four were physicians, and two were dentists or other professionals. Nine MASCC Young Investigator Awards were also given out to early career researchers with the highest ranked abstracts. The Outstanding Young Investigator Award was earned by Dr Shari Goldfarb for her abstract, “Sexual dysfunction negatively
impacts quality of life in women with breast cancer”, a prospective study of more than 500 women with breast cancer. EONS representatives made a presentation at the Best of Supportive Care session, met with MASCC leaders and study group leaders, and promoted EONS at every opportunity. Further talks with Richard Gralla, chair of the MASCC/ISOO 2012, explored future collaboration of EONS with MASCC at the next year’s congress in New York. Joanne Bowen
Starting a New EONS Tradition
Eleven participants from across Very empowering! The outline Europe were selected on the basis and structure was brilliant of a short application and CV to attend the first EONS Research On the last morning, they met Workshop “From Clinical three cancer nurses from the Problem to Research Proposal” Royal Marsden – Theresa held at the Royal Marsden Wiseman, Natalie Doyle Hospital, London in June. and Natalie Pattison – The three-day workshop was who recalled their facilitated by three members combined clinical practice of the EONS Board – Danny and research in their Kelly, Ulrika Ostlund and own careers and how Mary Wells. their research had The aims of the workshop influenced practice. were to develop skills, The workshop was strategies, knowledge and challenging and hard work confidence in refining a but participants came away research question, selecting with strategies, questions and appropriate methodological plans to discuss with nominated approaches and realising a mentors, who will receive a small research plan. mentoring fee from EONS to enable The participants brought with them them to support participants to continue fantastic research ideas, covering a range working on their proposals. of diverse topics including adherence to Evaluation forms suggest that the oral cancer agents; hope in end-of-life workshop has achieved one of the care; the experience of 23-hour breast Probably some of the most significant core aspects of EONS’s care surgery; the needs and experiences of days of my life. So many brilliant ideas, strategy – to help oncology nurses nurses caring for dying patients; to realise their potential. The delay in head-and-neck cancer so many bright people from all over feedback also gave an indication on diagnosis; models of metastatic breast Europe, so great instructors! Thank you! how future workshops should be cancer care; tacit knowledge for improved, including additional nursing assessment; psychotime for small group work and “hands on” presentations, discussions and small educational interventions for fatigue; practice at using databases and calculating working groups were used, based on these radiation skin reaction assessment; research costs. Danny, Ulrike and I left the ideas, to explore the practical and palliative home care and comprehensive workshop inspired by such a motivated theoretical aspects of writing a research geriatric assessment. A combination of and committed group of cancer nurses. proposal, applying for research “We hope that we have now started a new funding and carrying out a I have been so lucky and happy to EONS tradition!” they said. research project. It wasn’t all work though! On the Mary Wells be involved in this workshop. It has first evening, participants had a been inspiring, motivating, useful. One meal together and got to know more about life and cancer nursing in all of the best achievements was the This workshop has left me the countries represented (UK, Italy, contacts we made and interaction feeling motivated to Slovenia, Greece, Belgium, Germany, with people from around Europe Netherlands, Ireland and Sweden). undertake my research project
I donâ€™t Want to be a Little Doctor,
I Want to be an Excellent Nurse
Paulien Staal is one of the few advanced nurses who was accepted for the fourth ESOEONS masterclass. The goal: to update knowledge, develop new clinical skills, reflect on their role, and generally get to know one another. Here she recalls this unique experience.
When I first heard about the fourth ESO-EONS masterclass, I thought it was a course for very experienced excellent oncology nurses. And I turned out to be just partly right about that. There were indeed some highly experienced, excellent nurses, but fortunately there were some young, not so experienced nurses, as well. And I think the masterclass in oncology nursing was something we could all use. It made us more enthusiastic. It gave us new strength and courage to discuss new difficult items and address issues. It stimulated us to implement new evidence-based practice and improve patient care. And last but definitely not least, it gave us new friends! We met the other participants in a beautiful conference centre situated on the side of Lake Constance â€“ a group of 22 oncology nurses from all different countries in Europe (and even one from Canada). For six days, five nights, we updated our knowledge, developed new clinical skills and reflected on our own
role as (advanced) nurses. Each day we discussed different items in smaller coaching groups. We thought about what we had learned and what we would bring home from that day. We told each other how the masterclass would change our practice, what we would do with the
The nurses of the 2011 EONS-ESO Masterclass. Just 22 nurses were accepted for the course at the Wolfberg Centre, Ermatingen
things we learned. During breakfast, lunch, supper and coffee breaks we discussed all kind of
things. Our relationship with other disciplines, the things we love about our job and situations we face that we find hard to cope with. We got to know each other and sometimes even became friends. I think getting to know my colleagues from other countries in Europe was the most valuable thing of the masterclass. We learned so much from each other! As a group we noticed, although patient care differs a lot throughout Europe, oncology nurses are mostly the same. We had great conversations and recognised many of the issues we face are common to us all. But our practice differs. In some countries there is less money. In some countries as the economy is becoming a bigger problem each year, nurses start to leave and to work in other jobs. Some countries differ in culture. In some the family doesn’t want the patient to know what he or she is suffering from. Parallel to our programme young medical oncologists had a programme as well. They discussed different kinds of cancer like colorectal, breast, gynaecologic, prostate and lung. Some of their sessions we attended. Aside from the medical sessions, joint sessions were scheduled to discuss items like palliative care, pain management and multidisciplinary team working. In the nursing group, we had workshops about the role, and development, of advanced oncology nursing practice, clinical assessment, evidence-based nursing, radiotherapy, oral medication, survivorship, consequences of cancer treatment and leadership in nursing care. In the coaching group, I was asked: “What will you take home from this masterclass?” And I think one of the things I would like to do something about is being a nurse. Not a ‘little doctor’ as one colleague said. In my daily practice I learn more and more medical skills. A lot
of patients visit me instead of their surgeon. I perform physical examination, I perform history taking, I discuss the results from tests with patients, and I talk about the possible treatment. What of those things makes me a nurse? I think being an advanced nurse means integrating medical and nursing skills as one. I would like to discuss this in the following months with my colleagues. Another thing I learned about was being a leader. In one of our last sessions we talked about leadership in nursing care and how it should not be confused with management. We were taught management is doing the right things but leadership is more about doing things right. Being a leader in nursing care means: ● Being competent (and recognising
This masterclass renewed my
passion to be an oncology nurse
Workshops formed the majority of the nursing course structure. Here, attendees closely examine thier communication skills.
competence in other nurses), Being humble, ● Being a role model, showing the way, ● Having clear communication about goals and approaches. I don’t want to be a little doctor, I want to be an excellent nurse. I want to bring nursing care to a higher level. I want to help new nurses, perhaps coach them, and teach them. There are so many things I would like to do to improve our patient care. In the coaching group we got some good advice: ‘Start easy. Pick the low-hanging fruits.’ And I want finish by saying: I have been refreshed, have gotten a boost and renewed motivation for my job, to be an oncology nurse. I would really like to recommend this course to every advanced oncology nurse. ●
Seeing is Believing Sevcan Atay, a teaching nurse in an in-patient unit at the Hacettepe University Oncology Hospital, Ankara, Turkey, was selected as the winner of the EONS Clinical Travel Grant 2011. She picked Minneapolis, Minesota, as her destination of choice and her targets were the oncology hospitals and research centres where she spent several weeks observing at close range oncology nurses at work. I arrived in Minneapolis at midnight. I was exhausted after a 24 hour trip and bewildered, as everything was so different from my home town. My first encounter was with my flat mate, Elsie Anderson, who welcomed me and made me comfortable. She also prepared my programme of work with the help of Judi Johnson and soon I was thrown in the deep end. My first assignment was to visit the Bone Marrow Transplation Unit, Medical Oncology Unit and Oncology Surgery Unit at University of Minnesota Medical Center in Fairview, which cares for 30 patients. My job was to observe and work together with nurse managers and charge nurses. I noted straight away how much nurses rely on technology. All information regarding patient care is accessed by the nurse manager from a well-developed computer system, called EPIC. All the processes and interventions are detailed and controlled via the computer. Chemotherapy for example requires double checking, and failure to do this triggers a warning system. All the computers are connected to the Internet and team members communicate by e-mail. And so do the patients and their relatives. The only old technology was the white board in the rooms where nurses write their names and telephone numbers at the beginning of each shift. I was invited to observe departmental meetings where patients’ conditions and care plans are discussed. Everyone attends, from the managers to the clinical nurse specialist, the dietetician and the charge nurse. 8
My assignment at the Park Nicollet Research Centre was an altogether different experience. The centre, comprising three registered nurses and one PhD nurse, carries out phase 3 trials – last year they dealt with 225 trials. For each trial, research protocols are agreed between the pharmaceutical company and the research centre, outlining every single step. All trials are undertaken by doctors with nurses working as coordinators, although there was one study conducted by the nurses themselves. I then moved on to the North Memorial Health Center, where I observed three clinical nurses at work – a general oncology clinical nurse specialist who monitored the state of patients via a computer, and a breast cancer and a lung
cancer clinical nurse. They all had a master's degree in nursing. In the final week, as well as working in different departments at the Park Nicollet Methodist Hospital, I made home visits with a home care nurse and appreciated a valuable experience in seeing her evaluating the patient’s condition, from inspection of the skin, listening to the lungs and checking blood pressure and medicines. At the Park Nicollet Methodist Hospital, I had the chance to shadow a breast cancer nurse working as a nurse practitioner. I also observed the fascinating work of the radiotherapy unit, including preparing patients, taking their history and measuring their vital signs and weight. Travelling to Minneapolis, thanks to the EONS clinical travel grant, was the experience of a lifetime. I was able to visit hospitals and oncology departments, and observe nurses at work. This gave me a rare insight into how nurses’ roles vary in different countries and even within the same state. I found that, in many of these institutions, nurses have taken on some of the roles performed by doctors. One of the explanations is that, apart from the University of Minnesota Medical Center, Fairview, there is a general shortage of doctors and nurses are having to step in. This seems to be blurring the real role of nurses. I will remember this visit as a non-stop educational rollercoster and I am determined to seek a bursary to allow me to go back.
Sexuality and the Cancer Journey Daniel Kelly represented EONS at a unique event, the first Cancer Survivorship & Sexual
Health Symposium, held in Washington DC last June. EONS joined several societies, including the American Association of Clinical Urologists, the American Psychosocial Oncology Society, the European Society for Sexual Medicine, the International Society for Sexuality and Cancer and the International Society for Sex Therapy and Research, to endorse the symposium.
Organised by the Sexual Medicine Society of North America (www. smsna.org) and the International Society for Sexual Medicine (www.issm.info), this three-day special symposium, dedicated to explore the clinical, psychological and social impact of cancer on human sexuality, gathered 175 delegates from professional groups involved in the care and treatment of people with cancer from 20 countries. The international audience enjoyed a varied programme which opened with two plenary papers exploring the impact of cancer on men from a urologist’s perspective by Gregory Broderick, and the sexual health issues on women with cancer by Michael Krychman. Twenty-six peer-reviewed posters were also presented to the audience on the first afternoon. This was followed by a welcome reception where EONS and other supporting organisations were invited to introduce their society’s work in relation to the aims of this symposium. Certificates of recognition were also presented to supporting societies. Over the next two days, experts presented evidence-based information that reinforced the impact of cancer on intimate relationships. Presentations ranged from exploring the long-term socio-economic impact of prostate cancer to quality-of-life assessment for breast cancer sur-
vivors. Other topics included sexual health assessment methods for cancer survivors; the role of hormone treatments on sexual function; rehabilitation and sexual recovery after cancer and the needs of minority groups such as gay and lesbian people. Representing EONS, I gave an invited presentation on ‘Developing age appropriate care: relationships, body image & sexuality in young adults with cancer’. In my paper, I drew on recent research I had been Two EONS nurses, Maria Noblet, UK and Antoinette Attard, Malta joined Daniel Kelly using the EONS free registration for the congess.
involved in exploring the diagnostic experience of young adults and the possible enduring impact on their sexual and emotional wellbeing. Some of the most powerful presentations took place in the final session of the symposium involving patient advocacy groups. This included Tamika Felder, herself a young adult cervical cancer survivor, who spoke powerfully and frankly about the impact of this cancer experience on her body and lifestyle. She has since established Tamika & Friends to offer support and information to others about cervical cancer; further details can be accessed at http://www. tamikaandfriends.org/ The Cancer Survivorship & Sexual Health Symposium offered a unique opportunity for EONS to be involved in an important event that was both informative and well organised. The presentations were of a high standard and some will be available as podcasts via the International Society of Sexual Medicine website. It is hoped that EONS members may consider attending future events on this important topic as the sexual and emotional support needs of cancer survivors become better known. Daniel Kelly
Putting Evidence into Practice: EONS takes a lead in a European project
As part of the European Partnership for Action Against Cancer (EPAAC), EONS is leading part of work package 7, adapting nursing evidence reviews into European-friendly formats and facilitating implementation of these into practice. Through a joint activity with the European Health Management Association (EHMA) this work will provide feedback from European cancer nurses and their organisations on clinical guidelines implementation and barriers. At the first EPAAC Open Forum, held 14-15 June in Madrid, EONS Board member Anita Margulies presented an introduction to the Society’s contribution to the project, highlighted guideline implementation activities as well as inequalities within healthcare settings. As she explained, the work package will have a particular focus on new organisational perspectives in cancer care, specifically networks of cancer care at regional level and for low frequency tumours. Data also suggests that evidence-based guidelines in cancer are often not put into practice, hampering improvement in cancer care and patient outcomes. This work package will therefore focus on issues of implementation for managers and clinicians, and a key focus will be team working across these disciplines.
EONS will be concentrating on the adaption and translation of the Oncology Nursing Society ‘’Putting Evidence into Practice’’ guidelines (ONS PEPs) for a European audience over the next three years. The PEPs resources were developed by ONS advanced practice nurses, staff nurses and nurse scientists and provide evidence-based interventions for patient care and teaching. Interventions can be incorporated into telephone triage, policies and procedures, quality/performance improvement activities, and standards of care and order sets. Information from these resources can be integrated into orientation, educational programmes and nursing grandrounds. European clinical nurse experts as well as selected clinical settings will, in the near future, be directly invited to work with EONS on this project.
Package groups, led by different
EPAAC goals and structure The four pillars of the Cancer Partnership are: ●
Prevention (Health promotion and
Identification and promotion of
early detection); good practice in cancer-related healthcare; ●
Priorities for cancer research;
Health information, collection and analysis of comparable data.
To accomplish this, the EPAAC project has been divided into 10 Work
Coordination, Steering Group
Dissemination and Virtual
The History EPAAC was initiated by the EU Commission in September 2009 bringing together the European Commission, Member States and their Ministries of Health, patient organisations, health professionals, scientists, private industry and civil society. It launched an ambitious agenda to tackle cancer across the EU and EONS was invited to join. At the first meeting, EONS Executive Director, Clair Watts, introduced attendees to EONS structure and governance, strategies and activities whilst at the second meeting Sara Faithfull presented an overview of the EONS PEPs project to all the work package groups.
Partnership WP 3
Open Forum and Secretariat
Health and Promotion
Screening and diagnosis
Information and Data
WP 10 National Cancer Plans
INTRODUCING RESOURCES FOR NURSES WORKING WITH PATIENTS WITH CANCER FROM THE IN 2011, ONS AND EONS ENTERED AN AGREEMENT TO BRING THE ENTIRE PUTTING EVIDENCE INTO PRACTICE RESOURCE (PEP) COLLECTION (SEE RIGHT FOR DETAILS) TO THE EUROPEAN CANCER COMMUNITY. AS PART OF THE AGREEMENT, EONS WILL TRANSLATE THE PEP RESOURCES INTO DIFFERENT LANUAGES INCLUDING: • • • • • •
GERMAN DUTCH SPANISH ESTONIAN DANISH FRENCH
LOOK FOR MORE INFORMATION FROM EONS ON THIS EXCITING PROJECT IN THE NEAR FUTURE.
PUTTING EVIDENCE INTO PRACTICE: IMPROVING ONCOLOGY PATIENT OUTCOMES Edited by L. H. Eaton and J. M. Tipton
Since 2006, the highly successful Putting Evidence Into Practice (PEP) resources have helped thousands of oncology nurses worldwide implement evidence-based interventions into their practice, improving nursing-sensitive patient outcomes.
Putting Evidence Into Practice: Improving Oncology Patient Outcomes, now in its fourth printing, includes all the updated PEP resources (volumes 1–4) and assessment and measurement tools, and provides ideas for patient care and organizational use as well as case studies to illustrate application of the resources. Nurses can utilize the measurement tools and references to begin to measure application of interventions in practice, helping to document and validate the impact of nursing interventions on patient outcomes and, ultimately, leading to improved patient satisfaction, recognition of a professional approach to care, and optimal patient outcomes. The ONS PEP resources were designed to provide nurses–from novice and experienced oncology nurses to advanced practice nurses and nurse scientists–with current evidence to help guide their nursing practice. You’ll find all the PEP resources at your fingertips with this complete reference you can use to guide your daily practice. 2009. 324 pages. Softcover.
US Oncology Nursing Society congresses are always flamboyant affairs combining pageantry with business. EONS President Sultan Kav and Vice-President Birgitte Grube report on the 36th Annual Congress held last April in Boston.
“Made me Nuclear” Message of Hope Congress started with a high-octane musical parade where all the international delegates marched in with flags and Dutch nurses clad in orange. The grandstand play continued at a dazzling ceremony where four oncology nurses were honoured for their contributions. Donna L. Berry, director of the Phyllis F. Cantor Center for Research in Nursing and Patient Care Services in Boston, Massachusetts, received the Distinguished Research Award for studies that have enhanced the science and practice of oncology nursing. Martha Langhorne, a nurse practitioner with Binghamton Gastroenterology in Binghamton, New York, was given the Pearl Moore Making a Difference Award for contributions to oncology nursing at the local and regional levels. The International Award went to David Makumi-Kinyanjui,
a Kenyan national who manages the oncology programme at Kenya’s Aga Khan University Hospital in Nairobi. Finally, the ONS Lifetime Achievement Award went to Judith Johnson, a nurse consultant with HealthQuest in Richfield, Minnesota and a past president of ONS. She received a standing ovation as her achievements in research, education, and advocacy were read out. The keynote address was given by Charlie Lustman, author of the musical HOPE Campaign. Lustman, a practicing musician, learned in 2007 he had osteosarcoma of the jaw. He turned the devastating diagnosis into a message of hope and today performs his one-man opera “Made Me Nuclear” at cancer centres and community theatres across the country. The CD, available at www.MadeMeNuclear.com, chronicles his cancer journey, starting
with the physician’s call, through removal of his upper jaw, to his decision to be a survivor rather than a victim. Lustman proudly announced he is now “NED,” no evidence of disease. At the International session David Makumi presented “Nursing Response to the Cancer Problem in the Developing World: A Kenyan Perspective”. Having worked with patients and their families to develop survivor support groups and advocating formal training of nurses involved in cancer care, Makumi is currently leading a civil society movement lobbying for the enactment, by the Kenyan Parliament, of a National Cancer Control bill into law.
The Oncology Nursing Society ONS is a professional organisation of more than 35,000 registered nurses and other healthcare professionals committed to excellence in oncology nursing and to leading the transformation of cancer care by initiating and actively supporting educational, legislative, and public-awareness efforts to improve the care of people with cancer. ONS provides nurses and healthcare professionals with access to the highest quality educational programs, cancer-care resources, research opportunities, and networks for peer support.
Susan Moore led several speakers in a discussion on oral oncolytics, the oral agents for cancer treatment. Her message to oncology nurses to facilitate patient adherence to treatment was educate, educate, educate. Rather than using a script, nurses were encouraged to individualise their approach, tailored to patient, and involve another family member or a friend, who can hear things differently from the patient overcome by anxiety. Presentations were concluded with new ideas and concepts such as medication self-management (MSM); goal setting, symptom monitoring and organisation of health care (social support/finances/depression/cognitive impairment). Saturday morning started with the tra-
ditional Mara Morgensen Flaherty Memorial Lecture given by Betty Ferrell, principal investigator of the ELNEC (End-of-Life Nursing Education Consortium) project. Ferrell shared amazing examples of how ELNEC trainers provide palliative care education around the world. The lecture, entitled “Nurse Exemplars in Psychosocial Care at the End of Life” is available in the September 2011 edition of Oncology Nursing Forum (ONF). During the congress, several topics relating to possible EONS/ONS collaboration were discussed and mapped out with ONS officials and staff – Paula Trahan Rieger (ONS CEO), Kate Shaughnessy (International Affairs), and Carlton Brown (President). This follows on from
EONS President Sultan Kav Meets the recipients of ONS Life Time Achievement Awards: 2011 recipient, Judith Johnson and 2010 recipient, Connie Henke-Yarbro.
the establishment in 2010 of an EONSONS memorandum of understanding. One new feature marked this congress from earlier ones, the scaling down of industry-supported satellite symposia and exhibitions. Massachusetts is one of nine states that have passed strict legislation regulating the activities of pharmaceutical industry and medical device manufacturers at professional conferences. In other words, no coffee, no food and no pens.
Connect, Learn and Advocate Congress is ONS’s primary conference. The 36th Annual Congress setout to offer interactive learning experiences and networking opportunities for oncology nurses to impart excellence in oncology nursing and quality cancer care. The result was a dazzling array of events including an impressive schedule of sessions, preconference educational courses and ancillary events. Everywhere there were exciting opportunities for participants. Exhibitions stalls offered not just the latest product and treatment
information, but also access to potential employers and connection with advocacy groups, or other attendees, via social networks. One of the most rewarding service is the one-stop ONS information shop where visitors can attend an informal presentation, watch membersubmitted nursing month videos, learn about how to get involved, find information publications, take the demo course about the ONS university, a unique online system that delivers continuing nursing education, and more, all in one convenient location.
If We Can Have an Alliance on War,
Why not an Alliance for Health?
The European Health Forum Gastein is the leading health policy conference in Europe. EONS President Sultan Kav travelled last October to Bad Hofgastein in Austria to observe 600 decision
makers from 40 countries discussing crucial topics on Europe’s health care systems. The European Health Forum Gastein has built a reputation of being the “Davos of healthcare policymakers” who come together to advise on and develop European health. The 2010 focus on “Health in Europe – Ready for the Future?” could not have been more topical. There were discussion forums on healthy ageing; chronic respiratory diseases; EU action and local partnerships for health; health literacy in Europe; personalised medicine; and healthcare in Europe. Parallel workshops were organised on reproductive health; the imperative of transparency; innovative solutions to patient adherence; risk communication; ageing and disease prevention; optimising care for rare cancers; the health workforce of tomorrow; and financing healthcare. Among the scores of workshops, “Chronic care in Europe”, organised by the Europe Multiple Sclerosis (MS) Platform, stood out. Speakers discussed MS patients’ access to co-ordinated care from a multi-disciplinary team, including a skilled nurse who can address emotional and social matters, as well as medical aspects of the disease. According to the recently published MSNEED European Survey, one in three nurses reported that standards of MS care are not adequately maintained in their country. The study, polling 280 MS nurses in six European countries, found considerable vari14
ations in the availability of specialised training and education for MS nurses. Overall, one in five nurses reported not receiving adequate training and education. Futurist Matthias Horx presented seven key trends describing how healthcare might look in the future. “We face massive changes in healthcare. Not only are we getting older, we continue to make technological progress…. The health sector has seen an upturn in all segments. It has expanded economically and the wellness and therapy products have lent health a genuine style of its own.” He cited the phenomenon of down-aging as an example. Besides living
longer, people feel and behave younger than their parents did at the same age. Alarm bells were raised over the shortage of healthcare professionals which will rise by 2020 to around 1 million across the EU. The forecasts predict a shortage of 600,000 workers in nursing alone by 2020 and a shortage of 230,000 doctors. Experts said, it is essential not only that there is a sufficient number of workers available in the health field but also that those workers deliver a quality performance. A special presentation was made of HEIDI, the European Health Information System, which provides information on health status, determinants, diseases, health systems, trends and policy aspects (http://ec.europa.eu/health/heidi). The meeting concluded with the European Health Award ceremony which was granted to the Chronic Disease Alliance which unites 10 public and professional health organisations representing more than 100,000 specialists, active in heart disease, stroke, hypertension, diabetes, kidney disease, cancers, respiratory and liver diseases. The quote of the day, chosen by Young Gasteiners, was “If we can have alliance on war, we can have alliance for health”. 2011: 14th EHFG will take place 5-8 October. The theme is “Innovation and Wellbeing: European health in 2020 and beyond” www.ehfg.org
Sailing with Ellen
The Ellen MacArthur Cancer Trust
The Ellen MacArthur Cancer Trust is a UK-based charity that,
through sailing, helps to rebuild young people’s confidence after
cancer treatment. It was established after its Patron, Dame Ellen
MacArthur, sailed with a similar organisation in France in 2000 called ‘A Chacun son Cap’ (‘Everyone has a Goal).
From the first trip in 2003 involving 10 young people aged 8-17 from two hospitals, the charity has grown considerably, and in 2010 it fulfilled its goal of working with every primary young persons’ treatment centre in the UK, taking 230 young people sailing. Sailing is an exciting and inclusive team activity, and all are encouraged to help sail the boat, which can be very empowering. It’s not really about the sailing though, it’s about being part of the crew and having a go at the activities on board and on shore that help increase confidence. Living and sleeping on a yacht creates an intimate environment and, with no computer games or TV on board, playing games and just talking help bonding. Conversations about cancer will develop naturally as the young people tell their stories, compare scars, or discuss issues or concerns, offering advice or support to each other long after the trip ends. It is sometimes the longest they will have
been apart from their families since treatment began, which is another huge step towards regaining lost independence. As the effects of cancer can last long after treatment ends, the young people can return each year. This can be important, as illustrated by the story of one such young person, Dan, now a Trust Ambassador, who first sailed in 2004 then relapsed, returning just before his bone marrow transplant in 2005 to sail with the Trust in a yacht race around the Isle of Wight. Afterwards in hospital he said the thought of coming sailing again was what was driving him to get better. To meet an adult who may have had the same cancer and is doing well, several years later, and in a position of responsibility on board is incredibly powerful for those sailing for the first time. The Trust has built up a unique community, sharing a sense of belonging for the young people, but also the volunteer crew, clinical and support workers. A medical
professional will travel on each trip, spending time with the young people outside of the hospital environment. In 2010 the Trust introduced a week for 19 young adults aged 18-24, from four hospitals. This year, 75 young adults from 12 hospitals will get this experience of a lifetime, and the chance to work towards a sailing qualification, as well as the 125 young people aged 8-17, and 165 returning. Cerys Propert-Lewis, Clinical Nurse Specialist at the Royal Marsden, commented “The philosophy of the Trust is a perfect fit for those of us who are working with young people living with and beyond cancer. The support offered helps each young person regain independence and fulfill their potential. It is also great fun, which is very important!” Tracy Curtis You can find out more about the Trust at www.ellenmacarthurcancertrust.org, or follow them on facebook or twitter.
Patricia A. Ganz is a medical oncologist who has spent the past 20 years doing systematic research on the impact of cancer and its treatment on healthrelated quality of life. Jim Boumelha asked her about cancer survivorship in the US and her role in helping put the post-treatment phase of the cancer experience onto the agenda.
Where Survivorship Care Really Gets Started “About 25 years ago, I was part of a group of people who established the National Coalition for Cancer Survivorship which put forth a definition of cancer survivor from the time of diagnosis until death and includes the family members,” she said. “That is very broad, but it does indicate that if we don’t think of every patient diagnosed with cancer as a potential long-term survivor, we will not provide a treatment plan that avoids late toxicity.”
The practical outcome is to encourage oncology teams to design therapies at the outset not just to maximise the chances of a cure, but also to minimise long-term side-effects and other more serious effects of cancer treatments. This, in effect, shift the focus to the post-treatment phase of the cancer experience, and that is where, she asserts, survivorship care really gets started. The US has no national cancer care plan. It has state cancer control plans, but
they do not affect the practice of medicine. It is only thanks to pioneers like Patricia Ganz that major coordinating efforts got off the ground at some key cancer centres to develop programmes that will improve the post-treatment management of cancer patients. There is now increasing awareness of the growing number of cancer survivors in the US, who now number about 12 million, or 4% of the population. The Federal Government (National Cancer In-
stitute) has an Office of Cancer Survivorship that leads research, but the Center for Disease Control as well as many other private philanthropic foundations also support research on survivorship. Among them is the LIVESTRONG Foundation, which supports the UCLA-LIVESTRONG Survivorship Centre at the Jonsson Comprehensive Cancer Centre where Ganz is based together with seven other centers of excellence. “Professional groups have also been taking the lead, in particular the Oncology Nursing Society and the American Society of Clinical Oncology are working to improve the delivery of cancer care and follow-up to cancer survivors,” she says. Survivorship care has been largely neglected for a long time says Ganz. As the medical care system focused primarily on curing the cancer and not on how to manage the after effects, patients were often left wondering about what follow-up would be needed. Too many patients, she adds, are troubled by persistent symptoms and side-effects of treatment that the medical care system seldom attends to, and these problems may cause ongoing suffering and, as she explains, they may pose a serious health threat. “Cancer survivors often neglect other aspects of their health and may remain at risk for second cancers and other serious chronic diseases (for example, heart disease, diabetes).” From the beginning of her lecturing career Ganz has strived to come up with something catchy to help people remember the important components of post-treatment survivorship care. This led to popularising the 3Ps which she explains in a Q&A piece published in BMC Medicine “Conceptually, the care delivery falls into three major domains: Palliation of ongoing symptoms; Prevention of late effects of cancer treatment or second cancers; and health Promotion to maximise future wellness. For example, the cancer
With the aging of the population, the number of survivor will increase dramatically, due to the high incidence of breast, prostate, and colorectal cancer in the elderly.
may be gone, but patients still can suffer from pain, fatigue or depression, for which palliative care approaches become central. Prevention of the late effects means monitoring and preventing common late effects such as osteoporosis, screening for second cancers (for example, skin exams, breast cancer after chest radiation). Health promotion is often overlooked because everyone is concen-
trating on monitoring for cancer recurrence, when in fact many adults are at risk for and will die from cardiovascular disease, stroke or diabetes complications. Making sure that all three Ps are addressed is an important aspect of survivorship care.” Ganz is proud of her role as a member of the Institute of Medicine (IOM) committee which published the report that put the spotlight on the challenges associated with addressing the needs of post-treatment cancer survivors. This documented the growing number of cancer survivors living after treatment ends and talks about how they are ‘lost in transition’, with unmet health care needs and little guidance or coordination in their health care. What does she hope for in the next five years? “My personal hope is that all patients will receive a treatment summary and care plan from their treating oncologist at the end of their initial treatment and be coached in how to engage in health promoting and disease preventing activities,” she says, adding that the wider use of electronic health records will improve coordination and communication among physicians and with patients, “and there is also part of health care reform that is looking to develop accountable care organisations that will be responsible for groups of patients and that may help.”
Ganz meets with her staff weekly to review
In November 2010, Patricia Ganz was awarded
activities of the UCLA-LIVESTRONG Survivorship
the American Cancer Society’s Medal of Honour,
Centre of Excellence.
the highest honour bestowed by the organisation.
Returning to Work after Cancer The Role of the Occupational Therapist
Being able to return to work after cancer is crucially important to survivors and to society at large. Occupational therapists have the skills to facilitate this process, using rehabilitation techniques and helping find solutions to everyday problems.
Catherine Hayden and Diana Greenfield
Cancer survivorship and the ability to work in the early weeks and months after completing treatment are important themes in current plans for England and Wales as outlined in the government’s new cancer strategy.1 They emphasise the importance of providing care and support for cancer survivors to enable them to return to work and remain in work. Another key document, the NHS Outcomes Framework,2 aims to enhance the quality of life of people with long-term conditions through improvements in employment levels for this group. Robust research evidence highlighting common problems in cancer patients is lacking. A Sheffield-based research study is setting out to identify common employment problems, using an occupational therapist to complete detailed assessments.
WHY USE AN OCCUPATIONAL THERAPIST?
Occupational therapists can help speed up return to work. Techniques such as setting goals and graded activity can contribute to successful patient rehabilitation. Such interventions used in breast cancer survivors have led to better quality of life including less cancer-related fatigue. Occupational therapists are well placed to identify the demands of a job and any specific barriers the individual is facing. Core assessments, including functional, physical or cognitive evaluations, are al-
ready being used in many settings, but their current role in cancer rehabilitation mainly focuses on increasing post-discharge functional abilities in the home environment and does not routinely examine return-to-work issues in great detail. This article briefly describes how the occupational therapist can contribute to both the assessment and provide structured individual vocational rehabilitation to address the challenges faced by cancer survivors wishing to return to work.
ASSESSING RETURN TO WORK
Fig.1. Occupational therapist assessing a client turning a screwdriver using the BTE Primus RS.
The occupational therapist starts by reviewing the individual’s medical situation in liaison with the medical team, before meeting the patient. There are a variety of occupational therapist’s assessments available to identify physical, functional, cognitive and psychosocial barriers to work. A standardised job analysis ensures that the occupational therapist is aware of the demands of the job. It is used to identify what and how activities are performed, to understand the worker’s outcome or skills, and to provide information on the working environment. Where practical, a worksite assessment may enhance a work profile assessment. Visiting a cancer survivor in the workplace, preferably with the line manager present, will elucidate any challenges
preventing a complete return to work. With consent from the cancer survivor, this can also provide an opportunity to open a dialogue with the employer, which can help foster a more understanding approach to the cancer survivor’s limitations. In some hospitals, specialist equipment is available to simulate the work environment for assessing physical abilities. For example, the BTE Primus RS can assess specific functional tasks. It can also be used for rehabilitation to prepare an individual for return to work (Fig.1). A more detailed assessment of functional challenges evaluates how well individuals can perform their daily activities. Fatigue is a well-recognised complaint after cancer treatment. In most cases, fatigue is short-term, but for some it can persist for
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months, if not years, and is a significant reason why many cancer survivors do not integrate back into the workplace. Indeed a full day’s work may leave an individual so exhausted that they are unable to meet their family and home responsibilities. Several standardised self-reported measures of fatigue are available to the occupational therapist. Non-standardised methods, such as the use of a fatigue diary, can also be useful. Either way, the purpose is to identify the extent and impact of fatigue on a cancer survivor’s ability to function. There is also increasing evidence of cognitive impairment following cancer treatment. In breast cancer patients, this has been dubbed “chemo-fog” or “chemobrain”. Cognitive assessment measures would depend on individual needs, but self-reported measures may have their place in the occupational therapist’s assessment toolkit. Occupational therapists will use their clinical skills and acumen to decide which assessment tools to use. Further assessments may be limited by time and case-management burden but, in any case, a comprehensive assessment will allow them to draw up a profile of potential mismatches between functional, physical and cognitive ability and work demands. These assessments usually provide the basis for devising a programme of recommended interventions.
‘Occupational therapists are experts in occupational assessment and analysing activities. They assist people to identify the occupations and activities that are important to them, assessing areas of dysfunction and solving problems of everyday living’ College of Occupational Therapists3 ise, onward referrals can be made to an alternative appropriate discipline. Education regarding general cancer and return-to-work issues may be offered by the occupational therapist, including ergonomic and environmental advice and practical tips. Occupational therapists may provide retraining to increase independence with daily tasks and may also provide equipment to allow independence where required. A period of work rehabilitation may also be set up by the occupational therapist to prepare the individual for return to work (Fig.2). It is good practice to include a follow-up assessment post return-to-work ensuring outstanding or new issues are addressed, which will maximise the success of the return-to-work programme. Specialist interventions, such as management of fatigue, pain and peripheral neuropathies, input regarding body image,
relaxation, cognitive retraining, anxiety or stress management and breathlessness management techniques are all commonly used by occupational therapists in cancer care. Deficits in these areas are likely to affect the ability to return to work, and such interventions therefore are likely to be beneficial alongside the overall process. The economic well being of a cancer survivor is in everybody’s interest. For the most part, the occupational therapist possesses the skills to facilitate this process. Returnto-work programs for patients with other long term conditions do exist. More evidence is required to fully advocate the occupational therapists input in this increasingly important clinical field. Details of the references cited in this article can be accessed at http://www.cancernurse.eu/ communication/eons_magazine.html
Fig.2. Occupational therapist
The aim of allied health professionals has been defined by Rankin et al. as “to improve quality of life, so that lives are as comfortable, productive and independent as possible.”4 It is clear that the more thorough the assessment from the start, the greater the understanding of the difficulties faced by the cancer survivor in returning to work. The occupational therapist will devise, in partnership with the cancer survivor, individual client-centred goals, often using motivational interviewing techniques. Alongside general return-to-work advice and information, specialist rehabilitation may often be required. If issues fall outside the occupational therapist’s area of expert-
supervising a client practising climbing a stepladder.
Sheffield Teaching Hospitals NHS FT
PROVIDING APPROPRIATE REHABILITATION FOR RETURN TO WORK
Reducing Cancer-Related Fatigue
The Impact of Complementary and Alternative Medicine Table 1:
The use of Complementary
CAM intervention frequency and length of intervention course
Type of CAM
and Alternative Medicine Acupuncture/ acupressure
Molassiotis et al. (2007)
Balk et al. (2009)
during the last few decades
Post-White et al. (2003)
even relieving fatigue
Ahles et al. (1999)
Listing et al. (2009)
has grown considerably
related to cancer. However,
Aghabati et al. (2008)
its safety and effectiveness
Decker et al. (1992)
Progressive Muscle Relaxation Therapy (PMRT)
Demiralp et al. (2009)
Cohen et al. (2004)
Danhauer et al. (2009)
Fede et al. (2006)
Montgomery et al. (2007)
Tsang et al. (2007)
Barton et al. (2009)
Oh et al. (2010)
Frequency of intervention
Fatigue experienced by patients during and following cancer treatment, is a significant clinical problem. It is a prevalent and distressing symptom yet pharmacological interventions are little used1 and confer limited benefit for patients.2 However, many cancer patients use some form of Complementary and Alternative Medicine (CAM), and some evidence suggests this may relieve fatigue.3 A review was undertaken to provide a contemporary appraisal of the relative effectiveness of different CAM interventions in managing cancer-related fatigue. Biomedical, nursing and specialist CAM databases were systematically searched for relevant articles, excluding exercise interventions and cognitive behavioural therapy (CBT) interventions as they are not consistently considered to be CAM. Additionally, a number of systematic reviews have recently been published on the positive effects of exercise and CBT in managing cancer-related fatigue.
Once a week Once or twice a week
Length of course of intervention
6, 7, 11, 13, 14 3, 9, 10 2
Twice a week
Three times a week
< 1 week
> 6 weeks
9, 10, 14, 15
4, 8, 11, 12
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Data extraction and quality assessment
Studies were reviewed using an investigatordeveloped data extraction form and were assessed for quality, using the Oxford Quality Score as outlined in Table 1. Scores less than three indicate low quality and high risk of bias in the study. Scores superior to three indicate good study quality and low risk of bias in the study.4
Impact of CAM interventions on summary fatigue score
Molassiotis et al. (2007)
Balk et al. (2009)
The team involved in this work also included Jennifer
% change from baseline
Acupuncture and acupressure
Fifteen studies were eligible for the review, of which 12 were randomised controlled trials. Forms of CAM interventions varied. Frequency of provision varied between daily to twice a week and length of intervention course varied between five days to 10 weeks (Table 2). Findings suggested acupuncture, administered three times a week for two weeks, was effective for reducing cancer-related fatigue. Medical qigong and restorative yoga were also found to be somewhat effective (Table 2). Most were methodologically weak and at high risk of bias. Findings suggested acupuncture, medical qigong and restorative yoga are somewhat effective for reducing cancer-related fatigue, whereas within the review this varied greatly in quality. There was some favourable evidence for restorative yoga, massage, hypnosis and Ginseng, although trials of sufficient methodological quality are still lacking. Multivitamins, Tibetan yoga and Progressive Muscle Relaxation were ineffective for reducing cancer-related fatigue. There is currently insufficient evidence to conclude with certainty the effectiveness, or otherwise, of CAM in reducing cancer-related fatigue. The design and methods employed in future trials of CAM should be more rigorous.
Type of intervention
Acupuncture and acupressure
Massage and therapeutic touch Post-White et al. (2003)
Ahles et al. (1999)
Listing et al. (2009)
Aghabti et al. (2008)
Relaxation therapy and training Decker et al. (1992)
Demiralp et al. (2009)
Tibetan and restorative yoga Cohen et al. (2004) Danhauer et al. (2009)
Other CAM approaches Fede et al. (2006)
Montgomery et al. (2007)
Tsang et al. (2007)
Barton et al. (2009)
Finnegan-John, and Prof. Emma Ream from Kings College London, and Prof. Alison Richardson from the University of Southampton, UK.
Details of the references cited in this article can be accessed at http://www.cancernurse.eu/ commu-
Transition to self reliance Regaining independence can be the first challenge cancer survivors have to confront
at the end of their treatment. Health professionals can support patients to meet their
needs by changing their approach from fixing patients problems to helping them find their own solutions and regain self reliance.
eaching the end of cancer treatment is a milestone and is the point, in theory, at which patients can start getting their lives back to normal. The transition from patient to survivor comes with its own challenges1 and patients may well benefit from specific and targeted support from health professionals. To reflect upon what is required to facilitate this transition, the first question is what defines the relationship between health professionals and patients. Following diagnosis, patients often experience shock and can remain vulnerable and needy during their treatment. Patients are understandably preoccupied by coping with treatment, side-effects and dramatic changes in their normal lifestyle. The impacts are significant, broad and have consequences beyond the end of treatment itself. Health professionals rise to meet patients’ needs during these traumatic and difficult experiences and are experts at giving information and problem solving. Nurses often relish these supportive actions and can reap considerable job satisfaction in this helping role. The style of support nurses offer, however, needs to respond to the inevitable changes in dependency. Failure to promote independence at the right time consolidates a dependant relationship, where patients rely on professionals to resolve their problems. The challenge comes at the end of treatment, when health services begin to withdraw as needs become less biomedical in nature. Cancer survivors, however, continue to come back with physical, social and psychological challenges, which put a strain on the communication skill set of many health professionals. Survivors are just starting a process of adjustment and, instead of supporting this process, professionals attempt to resolve the problems brought to them.
In order to adhere to difficult treatment regimes, substantial social, financial and psychological adjustments have to be undertaken and a degree of dependence accepted. At the end of treatment where coping mechanisms may be exhausted, a further adjustment back to independence is a considerable challenge. Cancer survivors equally may not wish to, or may be unable, to return to the life they previously led.
HOW CAN SURVIVORS BE HELPED DIFFERENTLY?
Different approaches that support survivors to regain control of their lives are available, centring on helping re-acquaint people with their sense of control over their destiny. Essentially this is about making care and treatments person-centred and empowering. A strong therapeutic relationship with a health professional can strengthen a patient’s belief in their ability to manage present and future challenges. Ideally, health professionals should be supporting patient autonomy throughout their treatment, but it becomes paramount in the phase leading up to the end of treatment and into survivorship. This sounds easier than it is to do – particularly when the type of communication health professionals use tends to direct and educate, rather than explore and empower.2 The skills that need developing should focus on helping patients explore and reflect upon their thoughts and feelings, and are the basis of two counselling approaches – these are Solution Focussed Brief Therapy (SFBT) and Motivational Interviewing (MI) – that aim to help, without creating dependency. It is suggested that all health professionals should be able to learn and apply motivational interviewing skills3: both counselling approaches share some basic principles.
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Richard Towers, lead nursepsychological care at The Royal Marsden NHS Foundation Trust employs counselling approaches to help survivors regain their self reliance
The skills that need
developing should focus on
upon their thoughts and feelings
Of fundamental importance is the therapeutic relationship where the health professional is dedicated to listening, being empathic and following the patient’s agenda. Suspending your expertise is necessary but can be a challenge – if you reflect upon your communication style, you will probably find that you spend a lot of time finding solutions to others’ problems. Patients often don’t get a chance to consider what it is they wish to resolve, nor how they address the challenges. By constantly fixing, nurses disable normal coping mechanisms. Another key principle is to assume and believe in the patients’ ability to fix problems for themselves. Practically, this means avoiding making suggestions or giving information or advice of any nature (unless your patient asks for it). Avoiding leading the agenda can be achieved by sticking to an exploring agenda, i.e. asking open questions and simply reflecting back on what you hear. This is done without judgement and with an empathic understanding of how difficult changes are for each individual. The role of listening and empathy cannot be underestimated as skills that support change. Patients can be alerted to the success of other cancer survivors as part of this process, but this must be done carefully.
helping patients explore and reflect
WHY DO THESE TECHNIQUES WORK?
Reconnecting patients to existing skills and strengths develops their self-belief and helps survivors make change and re-build their lives. When nurses stop taking responsibility for fixing problems we invite others to step up and help themselves with our support. The main way a person can make the changes they want in their lives is by accomplishing small goals with little stress and being able to reflect positively upon them.4 This feeds self-belief and a sense of personal mastery, which is the main aim of this type of communication. It isn’t possible simply to ‘persuade’ people that they are in control, instead we need to help them prove their own ability to themselves. If we wish patients to make a successful transition into survivorship, we need to challenge and suspend our expert status, put a hold on giving information, listen carefully and work towards strengthening patients’ sense of control. This means letting go of the power inherent in the health professional/patient relationship. We must learn to facilitate, not dictate. Details of the references cited in this article can be accessed at http://www.cancernurse.eu/communication/eons_magazine.html
Font: Avenir LT Std 55 Roman
International Society of Nurses IN
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Survivorship more than just being (a) patient Jan Geissler has been living for ten years with chronic myeloid leukaemia.
He talks about how social Internet media engaged patients with many ways to share information at a global level and gave them the power
eing diagnosed with cancer, or experiencing a recurrence, often puts patients and their families on an emotional rollercoaster ride. Fear and anxiety, lack of support, lack of information, stigma, physical suffering and a world full of medical technicalities suddenly enter your life. Having cancer may lead to a change in a person's priorities regarding relationships, career, or lifestyle. Moreover, with cancer, treatment decisions often need to be taken within days to avoid further progression of the disease. Taking tough decisions when your life is threatened is difficult enough. To make an informed choice between the bad and the ugly, and to enable shared decision-
to join forces and make their voice heard. Jan Geissler
making with their medical professionals, patients desperately seek quality information. Such is the theory. Reality is even harder. From my own personal experience, I can confirm all of this is true. After I was diagnosed with chronic myeloid leukaemia (CML), access to information literally saved my life. I went for a standard health check in 2001 and found my white blood cell counts were way out of range â€“ and a bone marrow biopsy at the community hospital quickly revealed I had cancer. Being a young patient, my local oncologist referred me
directly to a bone marrow transplant centre, stating this was the preferred treatment with low risk, and my only chance for a cure. Step by step I found out that, beyond the mortality rate at my risk group of around 20%, a further 30% of transplant patients would suffer from chronic long-term effects for the rest of their lives. I talked to some of them – and I was pretty certain this was the beginning of the end. I did not allow the huge shock to take over my brain, so I started researching CML and the treatment options. At that time, there was hardly any up-to-date German-language information. Most brochures were two or three years old – but already outdated. The
The Internet has sparked a global advocacy movement to improve and increase cancer
survivorship – and to give patients a voice
when difficult decisions are being made Towards a new reality
Patient participation in the debate about patient information, healthcare services and budget priorities is not just a means of empowerment, but also an important responsibility of patient advocacy groups to step up our efforts to become strong partners and allies. Even though this is not commonly agreed everywhere, we’re already moving towards a new reality.
guidance received from various oncologists was also inconsistent. By chance, one of them told me there was something interesting going on in trials, but he did not know the details. Having studied in the UK and having worked in multicultural and multilingual teams, fortunately my English was good. I actually was in a much better position than many to find out more over the Internet. Soon I learned in online patient communities based in the USA and in Singapore about early results of an experimental targeted therapy which had shown impressive results. Via American publications I learned about an internationally renowned German clinician who was at a centre of excellence in Mannheim, about 400km away from my home. Luckily, a small phase II trial was recruiting there at that time, and some of the 25 candidate places were still free – which then gave me access to that experimental drug which was in last-phase development but not yet approved. I soon found myself travelling 800 kilometres each week just to be able to participate in that trial in Mannheim. At this time I told no one but my family about my condition. Being a young professional just two years after leaving university, I did not want to jeopardise my career. “If you were a human resources manager looking at two equal candidates, but one has cancer and the other, say, plays amateur football, who would you pick – even though in reality the footballer may be off work more often as a result of injury?” I asked
myself. So I travelled each weekend, and made sure I was at the clinic at 8am on Mondays to get my blood (and sometimes bone marrow) taken, and was back at my desk at 2pm, pretending to be an eager employee while my brain was spinning. For me, the treatment worked surprisingly well and, against all expectations at that time, has kept me in remission for 10 years now – even though the cancer has become chronic and is not yet cured, so the risk of recurrence remains the sword of Damocles still swinging above my head.
LIVING A DOUBLE LIFE
In the early 2000’s, the rise of the "Social Internet Media" provided engaged patients with many options to share information at a global level. I soon started living a double life, having launched the web community Leukämie-Online (http://www.leukaemieonline.de) for fellow German leukaemia patients where I shared what I learned from the scientific conferences, and what other patient advocates all over the world found out on CML treatment and care. We were all grassroots people, sharing our medical records and latest scientific papers over the Internet, discussing treatment options, side-effects and how to cope with having cancer. Survivorship in CML become more and more linked to what they knew about the latest news from trials, and being referred to a centre of excellence that knew about the latest updates. I spent hours and hours translating and simplifying English scientific materials on latest treatments for my German audience. Surprisingly, even though German is one of the most widely spoken languages after English in Europe, there was barely any information on latest trials and treatments in that language. Even top German oncologists rarely published their research results in German articles. But at that time I was travelling a lot for business – so I used my spare time at airports and on flights to translate and summarise, explain and sort. Soon the community became very large, showing a great need among people with leukaemia, which was considered a rare cancer.
GLOBAL ADVOCACY MOVEMENT
As if life was not difficult enough being a cancer patient and patient advocate, Germany has very strict laws about providing information on prescription medicines, to protect patients from “advertising”, so we needed to cross borders even virtually. German patient groups don’t easily get access to peer-reviewed information like medical journals, or even to the highly regulated 'Summary of Product Characteristics' of
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approved medicines, if made available in German. Luckily, for those fortunate to speak English well enough to digest scientific material, the Internet is not a walled garden, so no matter what German legislators said, web-based grassroots initiatives around the globe made sure that the latest information from clinical research and care was made available at the finger tips of cancer patients who wanted to know. Language remains a problem not only for patients and patient advocates, but also for physicians, nurses and pharmacists. There are 23 official languages in the 27 EU Member States, and inevitably it is the rarer cancers that tend to get left behind in the translation of the latest material. As a consequence, even some health professionals, including doctors and nurses, visit online communities like my Leukämie-Online to hear about updates on clinical trials, updates of guidelines in their own language, or what is of real concern to their patients, e.g. on side-effects or quality of life issues. The Internet has sparked a global advocacy movement to improve and increase cancer survivorship – and to give patients a voice when difficult decisions are being made. I soon came across globally networked patient advocates and realised that we needed to join forces in order for our voices to be heard. To make a change for patients and to make sure they are recognised as stakeholders and not subjects of healthcare, we came together to found coalitions like the European Cancer Patient Coalition in 2003, and the CML Advocates Network (http://www.cmladvocates .net) in 2007, acknowledging that similar challenges across countries can be tackled better if we are
together. Both organisations are today connecting hundreds of patient advocacy groups around the globe, aiming to raise their voice healthcare and research. We learned how to build the capacity of patient groups, and how to become accepted partners of researchers, clinicians, nurses, politicians and the industry – with the final aim to improve the survival and care of cancer patients. In the absence of breakthroughs in therapy, care and rehabilitation of most cancers, especially in the rarer forms, cancer will remain a key public health concern and a leading cause of disability and death over the next decades. Every year 3.2 million Europeans are diagnosed with cancer, about three times the population of the city of Munich where I live. The incidence is expected to rise further as the population ages. Cancer has become the second most common cause of death, in Europe, accounting for about onethird of all deaths, with almost every family being affected in some way by cancer. This deserves concerted action rather than a natural evolution. Multidisciplinary collaboration between researchers, clinicians, nurses, authorities and patients needs to become reality. I felt that in order to get there, multidisciplinary collaboration between researchers, clinicians, nurses, authorities – and patients – needed to happen. I wanted to be part of this. Survivorship actually has three dimensions: living with, through, and beyond cancer. We patients are much more than just the individual subjects of healthcare, and can contribute a lot to improve not only ‘overall survival’, but ‘overall survivorship’.
Panel discussion of experts and patients on 'Patient information: a walk on a tightrope' (LebensMUT patient seminar, 2009)
Cardiotoxicity of Anthracyclines in Childhood Cancer Survivors Anthracyclines, used in the treatment of several childhood cancers, are associated with cardiac toxicity that can decrease the quality of life or even shorten the lives of childhood cancer survivors.
MANIFESTATIONS AND RISK
Anthracycline-induced cardiotoxicity typically presents itself as a cardiomyopathy, varying clinically from asymptomatic cardiac dysfunction detected during a diagnostic procedure, to disabling clinical heart failure and death.6,7 It can become manifest during, but also many years after, anthracycline treatment. The cumulative risk of clinical heart failure in survivors of childhood cancer who were treated with more than 300 mg/m2 anthracyclines has been esti-
Elske Sieswerda and Elvira van Dalen
mated at 9.8% after 20 years of follow-up from the start of anthracycline treatment.8 The incidence of asymptomatic cardiac dysfunction after treatment for childhood cancer has been reported to be as high as 57%.9
Although it should be kept in mind that there is no safe cumulative dose,8 the most important risk factor for anthracycline-induced cardiotoxicity is the cumulative anthracycline dose the survivor has been treated with.8,10 Concomitant treatment with radiotherapy to the heart region also puts a survivor at high risk of developing cardiac late effects.10-13 Many other risk factors have been described, in some but not all studies. Examples are female gender, younger age at treatment, longer follow-up time, type of anthracycline and treatment with other chemotherapeutic agents.9,14 Many cohort studies have found an increase in the incidence of symptomatic and asymptomatic cardiac dysfunction with longer follow-up in childhood cancer survivors treated with anthracyclines.8,15,18
Treatment of cancer during childhood frequently leads to complications that can develop many years after the cancer has been cured.1,2 One of these late effects of treatment is cardiac disease caused by previous anthracycline treatment.3,4 Anthracyclines, such as doxorubicin and daunorubicin, are frequently used in the treatment of several childhood cancers, including solid tumours and leukaemias. With survival rates of childhood cancer patients now approximating 80%,5 there is a steadily growing group of survivors of childhood cancer that has to live with the consequences of anthracycline-induced cardiotoxicity.
Echocardiography is a non-invasive diagnostic tool that is suitable to determine left ventricular function and is frequently used for screening and follow-up of anthracycline-induced cardiotoxicity in childhood cancer survivors. Fractional shortening (FS) and ejection fraction (EF) are the most commonly used parameters of systolic function in childhood cancer patients and survivors.9,19,20 It is not yet known what the predictive value of abnormal echocardiographic parameters in childhood cancer survivors is on the occurrence of late clinical outcomes such as the development of clinical heart failure and cardiac death.20,21 However, in adult populations with cardiac dysfunction due to causes other than
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Anthracycline-induced cardiotoxicity is a frequent and potentially life-threatening late effect of treatment in childhood cancer survivors
anthracyclines, a decreased FS or EF increases the risk of clinical heart failure and mortality.22-24 It is also not known what the predictive value of other diagnostic tools, such as biomarkers and MRI, is on the occurrence of clinical outcomes in childhood cancer survivors.25
TREATMENT AND PROGNOSIS
In randomised studies in adults with asymptomatic cardiac dysfunction due to other causes, treatment with ACE inhibitors decreases the risk of developing clinical heart failure and mortality.26-29 One randomised controlled trial has compared the effect of an ACE inhibitor (enalapril) with placebo in childhood cancer survivors with asymptomatic anthracycline-induced car-
diotoxicity.30 This trial found no significant effect of enalapril on overall survival, mortality due to heart failure, development of clinical heart failure and quality of life compared with placebo. A posthoc analysis by the study investigators showed an improvement in one measure of cardiac function (left ventricular end systolic wall stress) in the enalapril group compared with the placebo group in the first year of treatment. The clinical relevance of this effect is not known. No effect was found after one year or in other echocardiographic parameters of cardiac function over time. Patients treated with enalapril had a higher risk of dizziness or hypotension and fatigue. Once symptomatic, the prognosis of anthracycline-induced heart failure is poor.8 In the end-stage of clinical heart failure, heart transplantation is the only remaining treatment option.31
Primary and secondary prevention
Anthracycline-induced cardiotoxicity is a frequent and potentially life-threatening late effect of treatment in childhood cancer survivors. Efforts have therefore been made to prevent or reduce the burden of anthracycline-induced cardiotoxicity. This has been done by studying possible protective interventions during childhood cancer treatment and by screening and improved follow-up care in survivors previously treated with anthracyclines. Potential interventions during treatment include the use of different cardioprotective agents, like dexrazoxane, different anthra-
cycline analogues and different anthracycline infusion durations.32-34 Several Cochrane reviews have shown that currently there is not enough reliable evidence for most interventions during cancer treatment that could prevent anthracycline-induced cardiotoxicity in children.32-34 More research is needed. However, there is evidence that the cardioprotective agent dexrazoxane reduces the occurrence of anthracycline-induced cardiotoxicity in children with acute lymphoblastic leukaemia and Ewing's sarcoma. No cardiac results relating to dexrazoxane use in other childhood malignancies have yet been published. Although there have been concerns about lower anti-tumour efficacy and increased risks of secondary malignancies, the systematic review on this topic did not confirm these concerns.33 The same is true for another meta-analysis, suggesting that dexrazoxane can be considered for use in childhood cancer patients.35 Worldwide there is consensus that childhood cancer survivors require long-term follow-up care that is focused on the early detection of late effects of treatment.36-38 Several collaborative groups have published guidelines with recommendations for the surveillance of childhood cancer survivors, including echocardiographic screening for cardiac follow-up in survivors treated with anthracyclines.39-41 Future research should clarify whether screening and subsequent treatment of asymptomatic anthracycline-induced cardiotoxicity improves the prognosis and quality of life of childhood cancer survivors. Details of the author profiles and references cited in this article can be accessed at http://www.cancernurse.eu/ communication/eons_magazine.html
Cancer Rehabilitation Program Quality of Life and Social Aspects As a result of constant advances in medicine, the number of cancer survivors is steadily increasing. Cooperation between Government, Parliament and volunteer-based cancer organisations in Italy has put the country in the forefront in the field of protection and recognition of rights for cancer survivors.
Francesco De Lorenzo, Elisabetta Iannelli and Paola Varese
Cancer survival rates are increasing in Europe1,2 and in the USA,3 and prevalent cases represent a growing proportion of the total population. According to estimates based on cancer registry data, there are more than 14 million cancer survivors in the European Union4,5 and 10.5 million in the US.3 In Italy they number more than 2 million. According to the country’s social security institute, the Instituto Nazionale Previdenza Sociale (INPS), cancer is now the leading cause of disability and invalidity (54% and 30%, respectively). For this reason FAVO*, the federation of voluntary-based cancer organisations, has made cancer rehabilitation a priority for their advocacy programmes. In 2003, the first national survey on cancer rehabilitation centres showed that the right to rehabilitation was not recognised for numerous cancer survivors, especially in southern Italy. A project was therefore designed to
gain insight into cancer survivors’ needs and access to rehabilitation services nationwide, and also to show that a multidisciplinary approach to providing these services would be of great benefit. The project was sponsored by Italy’s Ministry of Health, and carried out in partnership with scientific societies, cancer institutes and experts from leading regional cancer networks. The first White Book on Cancer Rehabilitation was subsequently produced to promote a better quality of life for cancer survivors. Cancer rehabilitation is about more than functional recovery, it has to be available from the time of diagnosis through palliative care. This involves also psychological support and cancer-specific multidisciplinary programmes – special post-surgery rehabilitation strategies have been developed,
for example, for patients with rectal and prostate cancer. It also involves social issues, and much lobbying was done to ensure early recognition of even temporary disability status, for instance following chemotherapy. The most striking achievement has been new regulations that facilitate and speed up social security invalidity
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mes in Italy
Cancer rehabilitation is about more than functional recovery for people with cancer… it also involves psychological support and cancer-specific multidisciplinary programmes.
benefit claims.6 In 2008, the first national observatory of disparities in cancer treatments was established jointly by FAVO, the INPS, the Italian Association of Medical Oncology (AIOM), the Italian Association of Oncologic Radiotherapy (AIRO) and CENSIS (Study Centre of Social Investments) . The
observatory publishes an annual report in which disparities and inequalities in therapeutic treatment and care are documented. As a result, it is now possible to study the economic burden of cancer – both the costs of acute and chronic treatments and the indirect social costs, which include days lost from work and delays in treating symptoms, which can result from failing to perform a specific cancer rehabilitation programme. FAVO representatives have contributed to the shaping of the National Cancer Plan. Thanks to their success in showing that cancer rehabilitation is an economic gain rather than a loss, Italy is now among the few European countries to take a comprehensive approach to cancer rehabilitation. A more comprehensive cancer rehabilitation programme is being evaluated within a study on the new needs of cancer survivors at five years after diagnosis. The study will identify long-term cancerrelated and treatment-related effects and try to indentify ways to prevent them; it will also define specific cancer rehabilitation programs to be used if needed. As cancer rehabilitation is now part of the approved National Cancer Plan, the healthcare system will have to design and pay for cancer
rehabilitation programmes. Welfare and job protection benefits are essential elements within cancer rehabilitation programmes since they improve survivors’ quality of life, and help them return to a ‘normal’ life after cancer treatment ends. Concerted lobbying forced the Government to take on board the requests coming from cancer organisations and enact the necessary legislation. A major achievement in the field of job protection for cancer survivors and their families was reached when a new regulation, passed in 2003, gave cancer patients working in the private sector the opportunity to switch from full-time to part-time positions while under treatment, and to revert to full-time arrangements according to their needs and capabilities. The same right has now been extended to public employees while people with cancer patients in their family are given priority over part-time applications where such positions are available. *FAVO, the Italian Federation of Volunteer-based Cancer Organisations, was established in 2003 as an umbrella organisation to represent the views of over 400 Italian volunteer-based, non-profit associations dedicated to providing support and helping improve the quality of life of cancer patients and their families/carers. FAVO’s mission is to network cancer patient organisations at any level (national, regional and local) and to increase the influence of cancer patients on health policy-making by making their voice heard so that their needs are met and their rights protected.
Details of the references cited in this article can be accessed at http://www.cancernurse.eu/ communication/eons_magazine.html
The European Oncology Nursing Society presents:
26-27 April 2012
Geneva, Switzerland Save the Date