EONS Magazine Winter 2015 by European Oncology Nursing Society

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Winter 2015

Cancer in children and young adults â&#x20AC;&#x2DC;Stimulating conversationsâ&#x20AC;&#x2122; shape the EONS Advisory Council meeting in Budapest, Hungary

The bright side of surviving cancer Neira Kameric

The speciality of young adult cancer care Maria Cable

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

Winter 2015

EDITORIAL

Samira Essiaf, SIOPE Secretary General

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

LATEST NEWS

Françoise Charnay-Sonnek – cancer nurse leads ESNO

EONS grants – ‘making a dream come true’

Website: www.cancernurse.eu

Remembering Bernhard Glawogger

EONS acknowledges Novartis and Hoffmann-La

‘Stimulating conversations’ – EONS Advisory Council meeting

Fax: +32 (0)2 779 99 37 e-mail: eons.secretariat@cancernurse.eu

Roche for their continued support of the Society as sustaining members. Print run: 1000 copies. Electronic version accessible to 23,000 EONS members. Design and production:

CANCER IN CHILDREN AND YOUNG ADULTS

A multi-professional partnership to improve

childhood cancer care

Survivorship Passport

The bright side of surviving cancer

The Royal Marsden NHS Foundation Trust

From bedside-to-bench-to-bedside

Disclaimer

Sharing knowledge of blood and marrow

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.

transplantation among nurses The speciality of young adult cancer care

27 Supporting children and the family during transition

The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of any translated materials contained within this edition of the EONS Magazine. © 2015 European Oncology Nursing Society

Author profiles and references can be found for this edition of the magazine at www.cancernurse.eu/magazine

EDITORIAL

A close collaboration Guest Editorial by Samira Essiaf SIOPE Secretary General For the first EONS Magazine of 2015 we have chosen the theme, Cancer in children and young adults. To ensure that we are bringing you the very latest in this important and fast-developing field we have partnered with the European Society for Paediatric Oncology (SIOPE) to produce this issue. We would like to thank SIOPE, and especially its Secretary General Samira Essiaf, for this unique collaboration. “Cancer in children and adolescents is a serious public health issue that can only be tackled through the partnership of all stakeholders dedicated to the optimal care of young patients in Europe. Every day, experienced nurses deal with children and young people with cancer, and their tasks include providing expert advice to patients’ families and exchanging key information and care recommendations with physicians. However, a better cooperation between all types of professionals involved in the paediatric cancer patient’s (and survivor’s) journey is crucial. “Through a multidisciplinary perspective, the mission of SIOPE (the European Society for Paediatric Oncology, www.siope.eu) is to ensure the best possible care and outcome for all children and young people with cancer. Representing all paediatric cancer professionals in Europe, SIOPE is currently developing a long-term strategy to achieve two main goals: to increase the cure rate and to improve the quality of cure of childhood cancer patients. “Because of their essential role in patients’ everyday lives, paediatric oncology nurses have been integrated in this important strategy. Several years ago, SIOPE and EONS established a close cooperation to tackle common issues,

especially via the project ‘Collaboration between nurses and doctors in paediatric oncology’ (initiated in 2007 by SIOPE, EONS and ECCO) which demonstrated the need for quality multi-professional team-working. This is why SIOPE will make sure to reinforce its strategic partnership with nurses, via EONS, in a joint effort to make this ambitious strategy a reality in the near future.“

SIOPE have contributed four articles to the magazine (pages 10-21). Elsewhere in this edition, we look at the emergent speciality of young adult cancer care and the growing awareness of the unique needs of these patients - which are slowly being understood and met, not least through the leadership and example of pioneering organisations such as the Teenage Cancer Trust. You can also learn more about the work of a paediatric nurse group that has been set up as part of the European Group for Blood and Marrow Transplantation to provide advice and training for nurses in this specialisation. In the news section, we bring you an interview with the new President of the European Specialist Nurses Organisations – former EONS Board member Françoise Charnay-Sonnek – who is working to advance the interests of all nurses across Europe, and harmonisation of nursing training. We also have a report from the latest EONS Advisory Council Meeting in Budapest; and we provide an insight into the latest recipients of EONS grants and their plans for developing their knowledge, advancing their careers and improving the standing of oncology nursing. We hope you enjoy this issue – and we wish you the very best in your career in 2015.

Françoise Charnay-Sonnek – cancer nurse leads ESNO Former EONS Board member, Françoise Charnay-Sonnek, is the new President of the European Specialist Nurses Organisations, ESNO. Jim Boumelha met her to discuss how she will deploy her leadership skills to advance the interests of nurses in Europe. Spending formative years between two distinct traditions of oncology nursing calls not only for special skills and a solid education but also a confident vision about the role of nurses in 21st century Europe. Françoise has an abundant supply of both. Born in South West France to a medical family – her father was a physician and her mother a nurse – and living in Alsace, she opted for an eclectic education that straddled France and neighbouring Germany distinct in language and culture but also in the traditions and practice of nursing. Françoise never saw this as an impediment – she mastered languages at the University of Freiburg in Mannheim before starting training as a nurse at the University Hospital in Heidelberg. Her voyage of discovery propelled her into the frontline of nursing care, into uncharted territories such as the then-revolutionary ambulatory cancer care in Heidelberg. This led her to studying management and pedagogy, and eventually becoming first head nurse at the urological department in the university hospital, then later at the Cancer Center Paul Strauss in Strasbourg – “a new experience being involved in cancer care not just from a medical point of view but from a surgical point of view”. From 2012, she also took up a special responsibility in pedagogy as head of education at the Ecole de Formation en Cancérologie (EFEC), in Paris, run by the Federation of Comprehensive Cancer Centres. At the same time, Françoise began working with cancer professional organi-

sations, starting with EONS in 2009 where she represented AFIC (the French Association of Nurses in Cancer Care), and later joined as a Board member. Meeting fellow nurses at international congresses shaped her views on the role of nurses and led to her taking up responsibilities in European cancer. Françoise also represented EONS on the ESNO Board, prior to becoming ESNO President. Back in France she realised how different it was from working in Germany. Although French nurses can do delegated medical tasks such as blood punctures, or placing peripheral venous catheters, critical thinking was missing and nurses sought recognition through technical tasks, not relational care. The education of nurses gradually became a central theme in Françoise’s activities. She proudly lists the valuable work undertaken by EFEC, which “aims to give continuous training to all heath professionals caring for cancer patients, from the physicians to nurses, nurse assistants, dieticians, social workers, etc., developing multi-professional training programs,” she says. Deeper still has been her involvement in the European Specialist Nurses Organisations (ESNO), which she now leads as its president. Although young and small, ESNO punches above its weight. It is recognised by many European agencies, including the European Medicine Agency, responsible for cancer drug approvals. Most importantly, it has taken on Europe’s lawmakers to achieve recognition of nursing qualifications through a new Directive. As

incoming president, Françoise has many ambitions. “Working closely with pharmacists and vets and using the tool of the common training framework, we can get this specialty recognised at EU level,” she affirms. “The common training framework is based on a common set of knowledge, skills and competences agreed by at least one third of member states, but it’s up to countries to add more competencies should they wish to,” she adds. But the icing on the cake would be to achieve harmonisation of training at a European level. “We have so many different ways of training. We have six-month training, we also have one-year and twoyear training. We have to get harmonisation,” she says. Françoise links this to another subject close to her heart: the free circulation of European nurses, to allow them to go to a country where their work is needed. “The ideal would be to have the same common training framework in each country, so that a nurse can work anywhere she wants and her qualification is automatically recognised. Last but not least, we should thus be able to ensure safety and quality of care,” she stresses. Françoise is now drawing up the agenda for ESNO’s 10th anniversary, which she would like to see drive forward the Directive of free movement and recognition of specialties in Europe. Bringing MEPs together with multi-disciplinary professionals and organisations, the ESNO summit, on 5 and 6 November may well be a turning point in the battle for recognition.

LATEST NEWS

EONS grants – ‘making a dream come true’ EONS has created a range of grants, all with the ultimate purpose of encouraging nurses to do excellent work and improve the general standard of oncology nursing in Europe. The EONS Research Grant allows a nurse researcher to carry out a substantial research project. Here, two recent successful applicants explain in their own words, what they hope to gain from this experience. Petra Stolz Baskett, lecturer ZHAW Zurich, Department of Health Professions, Institute of Nursing, University of Applied Science, Switzerland. Her EONS grant will fund a visit to The Peter MacCallum Cancer Centre, Australia. Petra told EONS Magazine: “The Peter MacCallum Cancer Centre (PeterMac) is the only Australian public hospital that is dedicated entirely to the care and treatment of cancer patients and their families and has an embedded research facility with a 520 person strong team. On my research visit, I would like to examine the research-practice collaboration working practices related to their research foci (see www.petermac.org). “Just as I started my own PhD studies in 2009, I heard A/Prof. Mei Krishnasamy, the head of the research team for patient experience and supportive care at Peter Mac, presenting at the ECCO congress in Berlin. Since then I have been dreaming of visiting Peter Mac, to learn more about the work they are doing and how they integrate research, practice and teaching so closely in one facility exclusively focusing on cancer patients and their families. To receive this award from EONS, therefore, means not only a recognition of my potential to develop my research competence further, but also to make a dream come true with regards to professional exchange at an international level.”

Alison Harrow, Cancer Research UK Senior Research Nurse/ Research Fellow, School of Nursing and Midwifery, University of Dundee and the Clinical Research Centre, Ninewells Hospital, Dundee. She will use her EONS grant to visit the Department of Neurobiology, Care Science and Society, Division of Nursing, Huddinge, Sweden. Alison said: “Research carried out in Dundee by myself and colleagues has shown that there is low adherence to adjuvant endocrine therapy with subsequent increase in morbidity and mortality. Side effects are not the only reason for low adherence but whilst we can address some of the other issues (e.g. lack of consistent monitoring) in the design of an intervention study we are still limited locally, in how

we support women to deal with side effects. I will explore possible collaborative research opportunities with Dr Yvonne Wengstrom, who runs a clinic to help women to overcome the effects of adjuvant endocrine therapy prescribed as a treatment in breast cancer, focusing on symptom management and lifestyle interventions – both of which she has studied extensively. “I also felt I could learn a lot from Yvonne about how to develop as a researcher working within a clinical environment. When EONS offered a Research Travel Grant I saw this as an excellent opportunity to spend time with her and her team. I was keen to learn about her programme of work and look for collaborative opportunities. I very much appreciate the opportunity the EONS Research Travel Grant has offered me and I plan to make the most of it.”

Petra’s objectives for the visit are to: 1. Establish a network with experienced researchers to learn about, examine and discuss approaches to develop, implement and evaluate new models of care 2. Establish an international network with experienced researchers to examine structured needs assessments of cancer patients and their informal caregivers 3. Be able to discuss the influence of cultural context on cancer care research in the area of geronto-oncology with a global perspective.

Alison’s three research objectives are to: 1. Examine how findings could transfer to a Scottish setting 2. Explore collaborative opportunities for grant funding based on health interventions to reduce side effects of adjuvant endocrine therapy 3. Explore how an intervention to reduce side effects could be developed alongside interventions designed to increase adherence to adjuvant endocrine therapy in women with breast cancer.

The Clinical Travel Grant gives the opportunity for recipients to increase their clinical experience with a visit to another cancer centre. Here two recent recipients explain how they will benefit from this valuable opportunity. Yvonne Hannhauser, Breast Care Department, St. James Hospital, Dublin, Ireland, was awarded a grant from EONS to visit the Fox Chase Cancer Centre, Clinical Cancer Genetics Department, Philadelphia, USA. Yvonne told EONS magazine: “As part of my clinical caseload for the Advanced Nurse Practitioner (ANP) in Breast Care in St. James Hospital, I see patients who attend our breast service for breast cancer risk assessment and subsequent clinical follow up as a totally independent nurse-led service. This is the only nurse-led role for this patient group in Ireland and therefore I am very keen to explore all possible nursing research in this cohort of patients. “I am aware of this role being very well established by an ANP (Agnes Masny) in Cancer Genetics in Fox Chase Cancer Centre, Philadelphia, USA. I am delighted to be in receipt of the EONS Clinical Travel Grant for 2015 as it provides an excellent opportunity for me to visit a very well-established cancer genetics programme. “The knowledge and experience gained during this visit will be of great value to my own clinical area as this is an expanding group of patients presently seen within the breast service at St. James Hospital, Dublin, and part of the caseload for the ANP in Breast Care. “By attending this facility, I am aiming to gain a valuable insight into the area of cancer genetics and the benefit of personalised cancer risk assessment. This will lead to a greater understanding of the subsequent information needs associated with cancer prevention or treatment planning for this patient group.”

Frederic Maddalena, Cliniques Universitaires St Luc, Avenue Hippocrate 10, 1200 Brussels, Belgium, was given a grant to make a clinical visit to the Centre François Baclesse (Rouan) in France. Explaining the reason for his choice, Frederic said: “I’m an oncology care coordinator, I’m the key person for patients with cancer. My job is to help them to cope with the disease and to improve their clinical path. “The Centre François Baclesse is one of the 20 Centres for the Fight Against Cancer in France. Their mission is patient care, research and teaching in the exclusive area of oncology in Basse-Normandie (Calvados, Orne, Manche). They have developed a specific approach for the treatment of patients using oral chemotherapy or target therapy. “There are more and more people on oral treatment in oncology which is easier for them but increases certain

risks. We need to assure security, coordination and support for these patients during the treatment. In order to achieve this, we need to develop tools and skills for: screening, information, therapeutic education, security, compliance, managing side effects, clinical pathways, guidelines. “To disseminate this knowledge, we plan on writing a report that will be available to the whole team here at St. Luc. Following that, we will organise a meeting to discuss what we have observed and to see with the team which tools can be adapted to our specific needs. Once this is done we will organise training to be able to use these tools and to improve our skills where needed.” *Why not undertake some research yourself? To find out more about how you can apply for a grant with EONS, go to www.cancernurse.eu/awardsgrants/grants.html

Yvonne’s three learning objectives from her clinical site visit are to: 1. Evaluate an already established cancer genetics service to compare with new role established in own clinical area. 2. Develop current knowledge base and clinical skills relevant to this specialised area of cancer care. 3. Explore potential research options that would benefit current clinical practice or patient care outcomes.

Frederic’s learning objectives are to: 1. See the type of organisation the Centre François Baclesse have developed to face the big changes in oncology nursing (care and follow-up of patients who take their chemotherapy home) and the network of professionals they need for that. 2. Observe the tools they use for screening and assessment during the treatment. 3. Know the status of these professionals, their skills and the training needed.

LATEST NEWS

Remembering Bernhard Glawogger The Association of Hematology Oncology Nurses Austria (AHOP) bids farewell to its former president. Bernhard Glawogger, a friend and staunch supporter of EONS, died from stomach cancer on November 11, 2014, after several operations and courses of chemotherapy. He will be sorely missed. Bernhard’s career began in January 1979 at the State Hospital in Graz, Austria, on one of the medical wards. He remained faithful to “internal medicine” and in 1991 was appointed as a charge nurse on one of the medical wards. This clinic later became the Clinical Department of Oncology at Graz University Hospital. Even then, Bernhard was very engaged in oncology nursing and over the years the development and growth of this clinic was largely driven by his engagement there. As a result of his unique professional commitment, his correctness and his thoughtfulness and steady will to continually develop oncology nursing, he was appointed head nurse of the Medical Clinic III at Graz University Hospital in 1993. After completing the special courses for nurse leadership at a college in Mödling, Austria, he was then appointed as head nurse of the hospital’s department of internal medicine, until retiring in 2014 because of his illness. In addition to his direct involvement in patient care, Bernhard also worked very closely with the planning and organisation of various continuing education events for Austrian nurses. Continuing

education at all levels was always an important issue for him and led to major involvement in continuing education for oncology nurses in Styria, Austria. His personal career development continued,

Bernhard Glawogger

earning a Master of Science in Nursing from Danube University Krems in 2007. In 1994, as co-founder of the Austrian Society of Hematology-Oncology (AHOP), he served as board member and then president from 2000 to 2013. He was successful in fusing the disciplines of oncology and hematology nursing in Austria. Beyond the Austrian borders, Bernhard was very active in initiating EONS’ educational courses for Austrian nurses such as TITAN and “target”. Despite the strain of his illness, Bernhard was able to publically present the “Cancer Nurse Initiative” in October 2014 for the 20th anniversary of AHOP. The “Cancer Nurse Initiative” was launched four years ago, to ensure the training and the standardisation of hemato-oncological care, a project that was very dear to his heart. AHOP has lost not only a good friend and companion but also an advocate for oncology nursing. He was a leader, meeting all challenges with an openness and commitment that was exemplary to all. AHOP 2015 EONS sends sincere condolences to Bernhard’s family and will remember him as a truly committed nurse advocate.

‘Stimulating conversations’ shape the EONS Advisory Council meeting in Budapest, Hungary In the last four years, the national member societies of EONS have been invited to apply to host the annual two-day EONS Advisory Council Meeting, where the EONS Board and the delegates of the Advisory Council meet for an update about EONS activities and to discuss future developments. Last year the Hungarian Cancer Society, Oncology Nursing Section hosted the event in Budapest, from 20-22 November 2014. Report by: Hungarian Cancer Society, Oncology Nursing Section

ONS President Erik van Muilekom opened the meeting. In the first session, the Hungarian Cancer Society, Oncology Nursing Section,introduced themselves to the members. Dr Lajos Géczi, President of Hungarian Cancer Society, and Márta Szalai, President of the Nursing Section, welcomed the participants. In a short presentation Mr Zsolt Cseri, board member of the Nursing Section introduced the history and the work of the Hungarian Section. (The meeting was also greeted by Society past-president Prof. Dr Edit Oláh, in a letter wishing participants a successful meeting.) Further Hungarian delegates were: Gabriella Puskás, Ilona Bencés, Eleonóra Talmaci and Orsolya Heinczinger. During the meeting, there were conversations and group discussions concerning key areas where oncology nurses are involved and where EONS can provide help and support for its members: in

research, education, advocacy and communication. Stimulating conversations started among the oncology nurses, who arrived from 20 different countries. At the end of the second day, we summarised the common priorities and professional needs, and addressed some of the challenges and issues which will shape the coming year. For the Hungarian Section this event was a new professional experience. The meeting highlighted that most of the countries experience the same sorts of problems and it was underlined that sharing

“The EONS meeting was an important event in the life of our Nursing Section and brought us closer to the ideals and the professional goals of EONS”

LATEST NEWS

The Advisory Council and EONS Board met staff at the National Cancer Institute on a clinical visit

Above: EONS President Erik van Muilekom reports back after discussions with members about their needs and expectations to help EONS target project work for the year ahead

best practice procedures is a great help for everybody. The â&#x20AC;&#x153;membership surveyâ&#x20AC;? used by EONS is an important new tool for the Hungarian delegates. We would like to conduct the survey among our own members as well this year to ensure the activities of the Section meet their demands. We also believe it is important to contact more nurses who speak English, and our plan is to support nurses in their study of the language. The presidency tries to find good opportunities to support English language courses for oncology nurses. Apart from this initiative, we have also introduced an English-speaking section within our own annual oncology nursing conferences, which will help and motivate the nurses to participate in international conferences. EONS has also motivated us to participate actively

in oncology nursing research. We will follow the ongoing projects and inform our members about the different opportunities, not only for studying but also for benefiting from the translations of professional materials into the local language. With this help, we can spread new information and new professional protocols in a wide professional circle. We plan to fully exploit this opportunity from now on. The EONS meeting was an important event in the life of our Nursing Section and brought us closer to the ideals and the professional goals of EONS. An important result of the meeting is that there are now many new, personal, face-to-face connections with the members and the leaders of the organisation. The EONS Meeting in Budapest motivates the Presidency of the Hungarian Nursing Section to strengthen international relations and establish more opportunities in this area. In 2015, we will integrate all these new opportunities into our professional work, and we will offer specific and precisely defined projects to our members.

A multi-professional partnership to improve childhood cancer care Childhood cancers are diverse and require complex treatments. The European pediatric oncology community is joining forces to develop a long-term strategy to sustainably increase the cure rate and the quality of cure for children and adolescents with cancer. Report by the SIOPE Office, Giulia Petrarulo, Communication Administrator

Childhood cancer is today the first cause of death from disease in children over one year old in Europe, with approximately 35,000 children and adolescents diagnosed and 6,000 dying of cancer every year1. Thanks to improved and more effective treatments developed by the paediatric oncology community during the last 50 years, survival rates are now relatively high (79.1%)2 and it is estimated that a â&#x20AC;&#x2DC;populationâ&#x20AC;&#x2122; of 300,000500,000 survivors currently live on our continent. However, 30 to 60% of them suffer in the course of their lives from treatment-related side effects that can have a strong impact not only on their health, but also their development and fertility, not to mention the psycho-social aspects related to adolescence and growth3. Treatment for childhood cancer is complex not just because patients are at a delicate age, but also because the diversity of

the diseases is covered by a single name. Paediatric cancers represent more than 60 diseases from new-borns to teenagers, an extreme complexity in a rare population. Moreover, while some malignancies have a good prognosis (acute lymphoblastic leukaemia, lymphomas, retinoblastoma and renal tumours), around 60% have a poor or very poor prognosis (e.g. acute myeloid leukaemia, CNS tumours, neuroblastoma, bone and soft tissue sarcomas, diffuse intrinsic pontine glioma) and there are also a number of extremely rare paediatric tumours4. A third complexity is the unequal provision of paediatric oncology care. A recent study has shown that in Eastern Europe, five-year survival is generally 10 - 20% lower than in the rest of Europe â&#x20AC;&#x201C; a disparity that is even higher for cancers with poor outcomes.5 This is due to the fact that not all countries have the means and/or the political will to implement the European Standards of Care for Children with Cancer6, a reference document designed to assess progress in drug development, treatment and care in treatment centres which has been developed by the paediatric oncology community via SIOPE7.

A COMPREHENSIVE STRATEGY FOR A COMPLEX SITUATION SIOPE (the European Society for Paediatric Oncology8) represents and empowers all professionals dedicated to the optimal care of young people with cancer, through the integration of research,

CA N C E R I N C H I L D R E N A N D YO U N G A D U LT S

The mission of the European Society for Paediatric Oncology (SIOPE) is to ensure the best possible care and outcome for all children and young people with cancer in Europe

A dedicated working group in the framework of the ENCCA project9 identified seven specific objectives to reach these goals (see table) as part of a strategic ‘European Paediatric Cancer Plan’. The Plan has been endorsed by the wider community at the recent SIOPEENCCA Conference ‘Joining efforts for a brighter future for children and adolescents with cancer – The European roadmap to 2020’, which was held in Brussels, Belgium, on 18-19 September 2014. It is set to be implemented through closer partnerships with all stakeholders, including nurses, strong and integrated research programmes, a strengthened presence of paediatric haematology oncology in the European cancer agenda, and the commitment of all funding bodies, as well as training and education of all health professionals taking care of children and adolescents with cancer.10

A MULTI-PROFESSIONAL APPROACH

All stakeholders joining forces to find better cures for childhood cancer.

care and education, and by establishing strong partnerships with nurses (through EONS), parents and patients (via Childhood Cancer International, formerly ICCCPO), adult oncologists, regulators and the pharmaceutical industry. More recently, the European paedi-

atric haemato-oncology community decided to invest time and energy in a joint effort to develop a long-term sustainability strategy to increase both the cure rate and the quality of cure of children and adolescents with cancer in the next decade.

It is widely recognised that multidisciplinary standard care is highly beneficial for a patient-centred approach to cancer care, through which more attention is paid to psychosocial aspects, quality of life, patients’ rights and survivorship. In this context, multidisciplinary and multi-professional teams are crucial for an optimal coordination among health professionals and a clearer communication with patients.11 This is even more true for paediatric oncology, a field in which care and research are already integrated in daily treatment and care (clinical trials are vital to improve the availability and the outcome of treatments for children and

The seven objectives

sional tumour boards for each paediatric oncology disease. These boards will be charged Introducing safe and effective innovative with providing expert advice treatments (new drugs, new technologies) on the best appropriate treatin multidisciplinary standard care ment and care for individual patients, and will be estabDriving therapeutic decision making by lished on three levels: Euroimproved risk classification and use of pean, national, and within the molecular characteristics (tumour, patient) – single institutions. precision medicine Specifically addressing the needs of teenagers and young Increasing knowledge on tumour biology and adults (TYA), in cooperation speeding up translation to the patients with adult oncology, is also essential for SIOPE, as these Increasing equal access across Europe to patients – at the ‘interface’ between adults’ and chilstandard care, expertise and clinical research drens’ services – have unique psychological needs and a Addressing the specific needs of teenagers and poorer survival rate than young adults, in cooperation with adult oncology younger patients. Although it has become increasingly Addressing the long-term toxicity and cancer clear that age-appropriate care treatment consequences including the genetic alongside their peers is pivbackground/risk – quality of survivorship otal, TYA patients are often marginalised, and looked after Understanding the causes of paediatric cancers in either children or adult and setting prevention where possible wards. Young people are also sometimes less likely to comply with treatment, and this adolescents with cancer). Moreover, as reflects in delays in treatment as well as childhood cancer is a rare disease, there not being able to access clinical trials. is a need for better cooperation between In this regard nurses can play a particuprofessionals from every field of experlarly important role, not only by worktise – including nurses – involved in the ing with teenagers in their own clinics, patient’s (and survivor’s) journey. but also by contributing to the developThrough a multidisciplinary perspecment of better TYA services at European tive, the mission of SIOPE is to ensure the best possible care and outcome for all children and young people with cancer in Europe. In order to ensure equal access to standard care, expertise and research in paediatric oncology, SIOPE is working to establish a ‘European network of reference centres’ in paediatric oncology, facilitating the referral of patients to specialist and expert treatment centres within EU member states and across borders. This network will be implemented through the ExPO-r-NET12 proThe SIOPE Office: Olga Kozhaeva, ject, which provides a framework for Samira Essiaf and Giulia Petrarulo promoting the creation of multi-profes-

level, representing the voice of TYA care and working alongside doctors, patient/ parent groups and other stakeholders.13 SIOPE has built over the years a strong and long-lasting partnership with parents’ and patients’ associations at the European level, (in particular via Childhood Cancer International), associations that have close collaborations with nurses at every level and believe in the role of oncology nurses as an essential reference point for both young patients and their parents. SIOPE is also tackling the need to ensure an optimal long-term follow up and quality-of-life for all childhood cancer survivors via PanCare14 – a network of health professionals, survivors of paediatric malignancies and their families, who collaborate to reduce the frequency, severity and impact of late side-effects of cancer treatment – and the EU project PanCareSurFup.15 Finally, high-quality training programmes for all health professionals in Europe, including nurses, aiming at a good quality of clinical and basic research in paediatric oncology are an essential aspect of the SIOPE activity. SIOPE mainly focuses on the promotion of high-level courses (e.g. the SIOPE-ESO Masterclass in Paediatric Oncology and the so-called ‘Flims Workshop’) and on the revision of the Syllabus for training in paediatric haemato-oncology16, making it a recognised sub-specialty in Europe.

PARTNERING WITH PAEDIATRIC ONCOLOGY NURSES For all these reasons, SIOPE has for many years established a close cooperation with nurses – and, more specifically, with EONS – in order to tackle all common issues in this field. Every day, experienced nurses bridge the information gap – both emotional and technical – that often exists between families and doctors, reassuring them when they have to face the terrible reality of a child affected by a mortal disease. Inside treatment centres, nurses are the main point of contact for both patient/families and multidisciplinary

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teams, and they provide case management throughout the care process. Their profession involves some of the most important tasks related to the treatment of young people with cancer, including providing expert clinical advice to families and exchanging key patient information and care recommendations with physicians. They also play a role in the patient follow-up as, given the high cure rate, on the long-term there is a lack of attention on the health issues affecting a growing adult who suffered from cancer in childhood. The knowledge nurses contribute to tumour board meetings is another important contribution nurses make, ensuring that diagnostic and treatment times are consistent with the targets set in this regard.17 In 2007, SIOPE, EONS and ECCO jointly initiated the ‘Collaboration between nurses and doctors in paediatric oncology’ project, aiming to help multi-professional teams to work together more effectively in the field of children’s cancer care. A three-year seminar series was organised involving both a doctor and nurse from 15 paediatric haematology/oncology units across Europe. Participants committed to take part in annual seminars as well as in the development and implementation of a local project to enhance doctor-nurse collaboration in their own unit.18 The outcome and feedback from the project showed participants were satisfied, and their collaboration had improved with more active involvement, group support and the activation of more formal relationships, concluding that effective cancer care is not possible without quality multi-professional team working. Paediatric oncology nurses are therefore a key stakeholder to fulfil the overall mission of SIOPE. The Society is aware of this and is committed to reinforce this strategic partnership with nurses, in a joint effort to make this ambitious endeavour a reality in the near future. For more information, please contact the SIOPE Office – office@siope.eu

Every day experienced nurses bridge the information gap – both emotional and technical – that often exists between families and doctors

Above: Panel discussions at the SIOPE-ENCCA

Below: Interested audience at the SIOPE-

Conference 2014.

ENCCA Conference 2014.

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

Survivorship Passport: a safe-conduct towards optimisation of long-term care With the number of childhood cancer survivors reaching new heights, it is increasingly essential to improve the quality of care they receive as adults. A new Survivorship Passport, which summarises their medical history and treatment and flags up associated long-term health risks, aims to help achieve this goal.

Report by: Riccardo Haupt

Between 300,000 and 500,000 people in Europe are survivors of childhood cancer, and it is estimated that another 8,000 join their ranks each year. As young people with cancer receive treatments during a very delicate period of growth and development, many of them may face significant long-term health risks. By the time they reach 40 they often have at least one chronic health problem and are at increased risk of early death mainly due to subsequent cancers or cardiac or pulmonary conditions.1 Other, non-lethal, chronic conditions can affect survivors’ quality-of-life, and it is important that all these issues are well addressed, especially during the critical moment of adolescence and transition to adulthood. Unfortunately, a large number of these survivors either do not have a treatment summary of their medical history, or are unable to find professionals in adult healthcare with adequate experience in diagnosing and treating possible late effects of childhood cancer treatments. Moreover, nowadays people are more likely to move abroad and may need documentation translated into another language. SIOPE together with PanCare2 – a network of healthcare professionals, childhood cancer survivors and their families – have put better access to optimal long-

The Passport is patient-oriented and accessible in multiple languages on a secure website

term care among their main priorities for all survivors of childhood cancer. The implementation of the ‘Survivorship Passport’ has been possible through EU-funded projects (PanCareSurFup,3 ENCCA4 and ExPO-rNet5). Thanks to a close collaboration between healthcare professionals (coordinated by the Gaslini Institute, Italy), survivors (ICCCPO) and IT experts (CINECA), an online passport was created providing relevant information on the medical history of each cancer survivor, including treatment data integrated from national/hospital

and clinical trials databases. Recommendations for tailored organ-specific follow-up, based on up-to-date guidelines (developed via PanCareSurFup), to facilitate the prevention, early detection and treatment of potential late effects are also provided. The Passport is patient-oriented and accessible in multiple languages on a secure website. Some paper versions of the Passport have already been made available at national level. Austria is the first European country to include the ‘Survivorship Passport’ in its National Cancer Plan.6 The goal now is for everyone to have a standardised Passport available both online and as a printed document. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

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The bright side of surviving cancer Report by: Neira Kameric

Neira Kameric played a key role in developing childhood cancer survivors groups in her native Bosnia and Herzegovina and across the Balkans. For her, cancer is not the worst thing that can happen, and turned out to be a positive experience that opened doors and opportunities.

I was diagnosed with non-Hodgkin lymphoma when I was twelve. It was a warm September, and I was getting ready to go back to school with my friends. But instead of the classroom, I went to the hospital. I was always a happy and positive person, so I didnâ&#x20AC;&#x2122;t let this small obstacle get me down. After I finished my treatment, I returned to my everyday life without being aware of how special cancer survivors were. My local association of parents of childhood cancer patients was very close to my heart, so I started to volunteer in fundraising. I did that for several years, along with a few parents. Survivors werenâ&#x20AC;&#x2122;t involved in the work of the association at the time. My mother attended the second ICCCPO1 European Meeting and when she came back she told me that survivors were an important topic in Europe. I had never thought about that before, but as I sat down and listened I was so excited to get involved! The idea of including the voice of survivors in paediatric oncology was so obvious, yet not so popular. I then attended the next ICCCPO European meeting in Luxembourg and that is where my active work as a survivor started. Together with my survivor friends, we established the first Cancer Survivor Network in my country, Bosnia and Herzegovina. We decided to raise our voices and let the world know that cancer is curable and that there is indeed a life after cancer. Our voice spread to the whole Balkan region, and young people who had suffered cancer during their childhood set up brand new cancer survivor networks in their countries. Serbia and Croatia were the first to create similar groups to improve the level of childhood cancer survivors.

The first regional Balkan cancer survivor meeting was held in Belgrade, where we talked about our experiences and how we want to and can improve our lives. Everyone was so happy to have somebody to talk to, that a second Balkan regional childhood cancer survivor conference took place the following year. There is a plan to organise one next year, so it is hoped it could become a tradition for Balkan childhood cancer survivors to meet every year. The second major step in Luxembourg was the establishment of a Parents and Patients Advocacy Committee (PPAC) within the ENCCA project.2 Coming from a small and poor country, I had no idea of what our task should be. We had our first official meeting in Vienna, and then spent three days discussing our goals, objectives and tasks. It was a great meeting, I learned a lot, got to know some great people and figured out what we needed to do. That was over two years ago, and only now that I look back at it do I realise how much we grew. It all happened so fast that I didn’t even have a chance to understand what we had achieved. For me, the Parents and Patients Advocacy Committee (PPAC) is more than a working group – it is my job; people working with me are not just colleagues – they are my friends; and the things we are doing are not just tasks – they are an inspiration for me, for other survivors and, most importantly, for children who are currently being treated, and of course, their parents and families. I am a very communicative and outgoing person and this experience gave me an opportunity to meet people from all around the world. That is one of the best things that happened to me, which I will cherish for the rest of my life. I am proud of my presentation skills, which have improved with time. I made

Above: Neira Kameric speaking at the recent SIOPE-ENCCA Conference Right: Neira Kameric at the European Parliament

presentations at meetings and conferences all around Europe, and the most important was the one that I made with my PPAC colleagues at the European Parliament in Brussels. The topic was ‘Tackling the inequalities between the East and the West’. This is a subject that is close to my heart as I come from a small and poor country in the “East”, and it was important to

have it in the open. I wished to contribute to improve regulations affecting us in Europe, although my great passion is to help my country and I want to implement everything I see in Europe in my country. As I am studying law, I am very keen to use that knowledge and to dedicate my life to improving or solving legal issues regarding childhood cancer which, hopefully, will be possible one day.

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We decided to raise our voices and let the world know that cancer is curable and that there is indeed a life after cancer

TWO MORE SEQUELS WERE EQUALLY IMPORTANT The first may sound like a cliché, but I look at life differently now. When you get a life-threatening disease and you look death in the eyes, you can never again take life for granted. You appreciate your health, your life, people around you, every new day and every opportunity. You don’t tire yourself with small problems, but you

enjoy small things. Every new breath and every new day is a gift that I like to use as much as I can. The second is travelling. I now suffer from a major wanderlust – a constant urge to travel. Although I don’t have time to visit cities as a tourist when I go to meetings, the host usually takes us for a tour. Although sometimes I don’t have a chance to see anything beyond the meet-

ing venue and the airport, this is enough for me. Even when it is very exhausting and tiring, the feeling you get is inexplicable and priceless. I have often heard younger survivors saying that I am their inspiration and that I helped them get through the battle with cancer. That is genuinely the best thing I could ever hear in my life, and definitely the biggest reward for my work. I live my life and do my work to be an inspiration to the next generations of childhood cancer survivors. That is my biggest dream and I am working hard to fulfil it. Now that you know my story, you can perhaps better understand why I say that cancer can be the best thing that ever happened to you. I am sure that in an ideal world there would be no cancer, and every child would be healthy. But I don’t live in that world, I can’t even imagine it. I don’t know how my life would turn out if I didn’t have the worst disease of this modern world, but I don’t even want to know. I may never know how it feels to be completely healthy and care free, who will? Those who are healthy are not aware of that, and they take life and health for granted. The easiest way to live life happily is to take your curse and make it a gift – to take your cancer and make it a reason to be happy and help others. My message to all children sick with cancer, survivors and their families is – you are masters of your lives and you can choose whether cancer will be the end or the beginning. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

From bedside-tobench-to-bedside A journey from paediatric oncology nursing into basic research Having started her career as a staff nurse in paediatric oncologyhaematology, Sara Colomer-Lahiguera (right) worked her way into clinical research and then basic research in childhood leukaemia. She argues that nurses’ involvement in all stages of translational research gives them a unique privileged role in healthcare systems.

uring my nursing studies, clinical rotations were part of my training and I remember the day I entered the paediatric oncology unit for the first time. I was somehow shocked to see this unit was – literally – the most “active”, with kids shouting and racing in wheelchairs through the corridors, little girls without hair laughing and exchanging stickers, waiting for their daily examination, and parents chatting with other parents. Doctors, nurses, parents and children shared their experiences, their hopes, their fears, their laughs and their tears, and as soon as I entered the unit, I felt I became part of a unique and special family. I could not describe what is it to be a paediatric oncology nurse, but I knew I did not want to be anything else.

THE PAST – FROM BEDSIDE TO BENCH: LIFE AS A BACKPACK I graduated in nursing in 2006 at the University of Valencia, in Spain, and I immediately started working as a staff nurse in several paediatric haematology and bone marrow transplantation units in pioneer hospitals. From the beginning, I was determined to develop my professional career in this field, and this is why even moving from one city to another was not a hurdle. At the same time, I always wondered about this twisted disease – why all these treatments with all these side effects? Couldn’t

we do it better? These years spent in a clinical environment taught me that, in order to gain deeper understanding of the disease, of the treatment strategies and diagnosis, I needed to move forward. I therefore obtained a Master’s degree in Clinical Laboratory research followed by another in Biomedical Basic research. Part of my research was performed in the Erythropathology Unit at the Hospital Clinic in Barcelona, and in the Department of Haematology at the Erasmus MC, Rotterdam in The Netherlands. This training qualified me to enter a PhD programme and to learn first hand a molecular and genetic approach to paediatric cancer. Step by step, I created a specific profile by combining the knowledge of different disciplines such as nursing and basic research, with a personal goal: to contribute to the improvement of the needs and quality of life of these patients. Almost without realising, I was outlining in my curriculum one of the principles of the translational research concept, an interdisciplinary interface between the basic and clinical sciences. This was not easy, but as a paediatric oncology nurse, I always relayed my experiences and I felt able to reach my goal, not only at the academic, but also at the personal level. As one of my patients once told me: “Don’t see barriers, those are challenges!”.

Report by: Sara ColomerLahiguera

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THE PRESENT – FROM BENCH TO BEDSIDE: THE IMPORTANCE OF RESEARCH I am currently in my final year of doctoral studies at the St Anna Kinderkrebsforschung - Children’s Cancer Research Institute in Vienna, Austria (http://science.ccri.at/). My research focuses on the detection and characterisation of genetic alterations involved in childhood T-cell acute lymphoblastic leukaemia, which accounts for 15% of paediatric leukaemia. Today I think, from a scientific point of view, there is no doubt that we have entered a new era of cancer treatment. Large-scale genome sequencing studies such as the Cancer Genome Atlas (http://cancergenome. nih.gov/) or the Paediatric Cancer Genome Project (www.pediatriccancergenomeproject.org/site/) are providing a better understanding of the alterations involved in the development of tumours. They have revealed that tumours harbour ‘actionable’ mutations, opening the field to the development of potentially new therapeutic targets, more precise than the standard chemotherapies, which act on all dividing cells, normal and cancerous. They also allowed the stratification of tumours in different subtypes that are often correlated with treatment sensitivity or resistance and clinical outcome, driving an optimisation of patients’ care. In other words, to know the specific genetic alterations of the

patient will allow the design of tailored therapeutic strategies, avoiding those treatments that are unlikely to be effective in this particular case, not only at the diagnosis stage, but also in case of cancer recurrence. Welcome to the era of precision – also called “personalised” – medicine! Translation of all this genomic knowledge acquired in the last decade into clinical application is, however, a slow process producing only few examples, and remains the main challenge for the future and for translational research. This will require implementation of well-designed translational trials, particularly important in case of paediatric oncology, where the eligible population for phase I-II trials is relatively limited due to the low mortality rates from childhood cancer on the one hand, and to the molecular profiling, which creates even smaller subgroups, on the other. All these facts may radically change the routine clinical practice and, as paediatric oncology nurses, we cannot miss this train and we have to look for new opportunities. We need to be creative and develop our expertise and expand our cross-discipline knowledge. As an example of how essential this bi-directional communication is between the clinics and basic research (“bedside” and “bench”), I refer to a recent case which, in our small daily scale, reflects perfectly the essence of the translational research

Above left: Sara Colomer Lahiguera Above right: Drawings made by young patients for Sara

concept and the importance of the interdisciplinary teams in promoting quality health care delivery. From time to time, we receive in the lab some genetic or molecular enquiries about difficult cases. In this occasion, the case was a patient with a leukaemia relapse, refractory to any kind of therapy, including bone marrow transplantation. Cytogenetic diagnostic showed a translocation in a gene usually not tested as first choice due to its unusual alteration; however, its partner was a mystery. It was at this point where the case was passed onto the basic research lab, seeking advice about the probable partner gene of this translocation. Based on the clinical information and published literature, we found a case-report paper published a few years ago, describing a rare translocation belonging to a very aggressive group of haematologic malignancies and leading to the activation of a tyrosine-kinase. In this article, the authors performed some in-vitro assays using pre-clinical drugs which showed their efficiency for this particular fusion. We carried out the molecular diagnostics and further confirmation for the presence of this fusion in our patient and sent our findings to the clinicians. This case is an example of how a question came from the bedside to the bench and returned specifically answered to bedside.

THE FUTURE – BETWEEN BEDSIDE AND BENCH: BUILDING THE BRIDGE All these experiences lead me to wonder about the value of nurses’ contributions to the interdisciplinary teams and to the translational research model. If we take a closer look at the scheme of how translational research works, we find a dynamic process, with feedback loops and a first phase known as “bench-to-bedside”, where the findings or the knowledge generated by basic science is translated into the development of new drugs or techniques leading to an improvement in diagnostic, prevention and treatment of disease. We also find within this stage the clinical trials, a second block where the aim is to translate all this knowledge into the everyday clinical practice and ensure it reaches the patients, communities or populations for whom they were intended. Our profession can easily be at the interface between basic science and clinical practice, combining different perspectives on biology, psychology, and social skill. Historically, we have been present during illness but also integrating health promotion and disease prevention. We are specialists in symptom management and in

developing strategies to improve adherence to complicated treatment protocols. We work with vulnerable groups and populations, and we have learned how to find effective and cost-efficient solutions. We have expertise developing, launching and establishing protocols and procedures and one of our valuable skills is communication, which allows us to translate and to adapt the message to the different segments of the population. We have expertise in clinic observations and in data management – this is part of our daily routine. We work bedside in the hospitals, indoors at the operating rooms or diagnostics labs, frontline as community nurses. We treat, we care, we monitor, we collect, we prevent, we listen, we communicate, we teach. As such, we are involved in all the stages of this translational research process and we possess a unique and privileged role within the healthcare systems that could serve us to assume leadership positions in the interdisciplinary teams. However, if we consider where we are and what our presence is, we find that we are still underrepresented in many of the organisations or decisionmaking groups where we should be one of the essential stakeholders. We have to reclaim our role. And this is especially true for paediatric oncology nurses: there are still many things to do! We must join forces to establish collaborations and create our network to share experiences, knowledge, problems and successes to improve our daily practice and therefore the care of our patients and their families. A paediatric oncology nursing career means lifelong learning, we still have time!

Drawings made by young patients for Sara

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Sharing knowledge of blood and marrow transplantation among nurses The European Group for Blood and Marrow Transplantation (EBMT) is devoted to the promotion of all aspects of the transplantation of haematopoietic stem cells, including basic and clinical research, education, standardisation, quality control, and accreditation. EONS has recently formed a partnership relationship with EBMT.

Report by: Eugenia Trigoso (on behalf of the EBMT Paediatric Nurses Committee)

In 2012, for the first time, survey data on the number of paediatric transplants were collected, either from dedicated paediatric transplant centres or in centres performing transplants in both adults (over 18 years of age at transplant) and paediatrics. A total of 4,041 transplants – 2,877 (71%) allogeneic and 1,164 (29%) autologous – were reported in patients under the age of 18. For this reason, The European Society for Blood and Marrow Transplantation (EBMT) Nurses Group formed a Paediatric Committee to give paediatric nurses the knowledge essential for dealing with children and adolescents in this area. The principal aim of the committee is to improve the care of paediatric and adolesAmong the 61 nurses surveyed: ●● 82% work in inpatient clinics, ●● 5% in outpatient clinics, and, ●● 13% in in/outpatients clinics. The most important requirement was to make access to education easier. Care for adolescents, patients and family education and evidencebased nursing were the topics nurses were most interested in.

cent stem cell transplant (SCT) patients and to promote, develop and share knowledge between paediatric nurses. What did we do? First, we launched a survey among nurses involved in the STC field to find out what paediatric nurses’ hopes were of this committee. Sixty one questionnaires were returned from 18 countries (Australia, Chile, Israel, Saudi Arabia among them, as well as Europe) and from a total of 46 hospitals. To make it easier to share information and knowledge among paediatric nurses, we identified a contact nurse in most paediatric SCT centres in Europe and in that way developed our own database with our own email address penuco3@gmail. com Now, we have more than 151 contact nurses with details from more than 51 transplants centres, from more than 28 countries and over 50 cities. We are really happy with this number but we are always looking for new contacts to add. The EBMT Paediatric Nurses Committee works closely with the EBMT Paediatric Diseases Working Party and the European School of Haematology (ESH) to develop and deliver the ESH-EBMT training course for paediatricians and paediatric nurses on hematopoietic stem cell trans-

plantation (HSCT) in children and adolescents. Lectures about pain assessment, fertility preservation and late effects after transplantation have been given by nurses. The courses were held in 2009 and 2011 in Genoa, Italy, and in 2013 in Bucharest, Romania, and were addressed specifically to postgraduate/resident level young physicians and paediatric nurses. Our next course will be Marrakech, Morocco, from 14-17 May 2015. Other educational projects have included a collaboration with Russian nurses, and a one-week Educational Programme has been held twice in Moscow and once in St Petersburg. We also held an EBMT Outreach Volunteer Health Professionals Circle last September in Florence, Italy, for doctors and nurses interested in volunteering for activities related to improving global access to bone marrow transplant (BMT). For the future, one of our goals is to improve collaboration between paediatric BMT units and paediatric intensive care units. The first step will be a survey in order to better understand the current situation in the different centres. To find out more about EBMT events and training courses go to www.ebmt.org/Contents/Education/EBMT%20Events/Pages/EBMT-Events.aspx

The speciality of young adult cancer care Teenagers and young adults with cancer have very different needs to those of adults and children. This is an important time for their development – physical, social, psychological, cognitive – and they need specialist care from a wide variety of professionals to achieve the best outcomes.

Report by: Maria Cable

ancer is never welcomed at any age but particularly in adolescence when so many life changes are happening on so many levels – physically, cognitively, physiologically and socially. In the UK alone, around 2,200 young people aged between 15 and 24 years develop cancer each year. Around 310 die from it – down from about 580 deaths a year in the mid-1970s.1 It is now well recognised that teenagers and young adults with cancer have needs that are distinct from those of both adults and children. This is now formally acknowledged in the UK National Health Service policy2,3 and by the UK’s Teenage Cancer Trust (TCT) in 2012,4 though internationally some countries (e.g. Australia5) are moving faster on this than others. There are, however, a growing number of advocates – including young people themselves, representatives of all the health professions, researchers and charities – who continue to champion globally the need to

acknowledge and act on this reality. Traditionally, however, and this is often still the case, these young people have been cared for in either paediatric or adult cancer environments, neither of which necessarily tends well to their specific age-appropriate needs. In 2011, however, young people themselves defined what they believe to be their rights with the launch of the International Charter of Rights for Young People with Cancer.6 Those working with paediatric or older adult patients need only concern themselves with either the upper or lower age ranges. Those working in Teenage/Young Adult (TYA) cancer care, by contrast, need to consider both ends of the spectrum, yet be mindful of all aspects of the specific clinical, physical and psychosocial issues facing this group of patients. The age limits and language used to define young people’s cancer often cause controversy within the international community (see Table 1).

Above: A young patient receives specialist treatment from a nurse in a relaxed environment that caters to the specific needs of young adults

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AGE-SPECIFIC ISSUES

TEENAGE CANCER TRUST

Adolescent development An understanding of the rapid change that is occurring in the physical, cognitive, psychological, social and existential make-up of adolescents and young adults is essential for all those working with them. This development will continue and evolve despite the diagnosis of a life-threatening illness. Indeed, their lives will be shaped by the cancer experience during adolescence. Therefore, the needs of these patients must be considered in the context of normal development, so that they grow into â&#x20AC;&#x153;functionalâ&#x20AC;? adults within society.7 A cancer diagnosis will unquestionably have an impact on the developing young person, so the provision of appropriate care and support services can also determine how well the young person is able to cope with the experience.8

Table 1. How TYA cancers are described by age and terminology Country/region

Age range (year)

Terminology

13-24

Teenagers/Young Adults (TYA)

Australia

15-24

Adolescents/Young Adults (AYA)

USA

15-39

Adolescents/Young Adults (AYA)

Eurocare

15-24

Adolescents/Young Adults (AYA)

Canada

15-29

Adolescents/Young Adults (AYA)

Clinical trials Teenagers and young adults with cancer are potentially missing out on life-saving treatments because few clinical trials are open to them. Arbitrary age restrictions mean teenagers are often too young or too old to participate in drug trials. This leaves them at a distinct disadvantage in terms of optimising the best possible clinical outcome, and also means that the development of new treatments has been poor. As a result of a study by Fern et al.,9 Cancer Research UK is one of the first major cancer funders to start asking researchers to justify age restrictions on new studies, in an effort to recruit more teenage cancer patients onto its trials. It is hoped that this practice will be expanded more widely in the UK and internationally. Multidisciplinary team working The complexity of providing care to this group of patients mirrors the complexity of the age and stage of life that they are at. Consequently, to meet their age-appropriate needs, multi-faceted holistic care, together with specific clinical care, is needed for improving outcomes. The nature of cancer treatment depends on the tumour type and stage of disease. Therefore, the impact of cancer and its treatments on adolescents, coupled with the challenges that this has on the period of development itself, further challenges the provision of true holistic care. Care pathways may well incorporate several medical consultants and their teams across different hospital sites in order to optimise clinical care. Alongside medical management is the requirement of expert, age-appropriate psychosocial care from a range of

professionals in nursing, psychology, youth work, education and social work, who understand the issues young people and their families may face, from diagnosis to survivorship or palliative care. It is likely that the care needed by teenagers and young adults would transcend organisational, institutional and often professional boundaries. Where care works well is through multidisciplinary team meetings that concentrate on clinical and psychosocial aspects where all members appreciate the challenges and benefits of providing ageappropriate care in a variety of care settings. Care environments and models of care The approach taken by the UK, with the financial and advocacy support of the charity Teenage Cancer Trust, has seen 28 teenage cancer units/ clinical environments developed within NHS Hospitals and clinical environments. Specialist built environments such as these are now emerging across the world, such as in Australia, USA and parts of Europe and Canada, though not in great numbers. Regardless of the built environment, the Teenage Cancer Trust advocates that such clinical areas should encourage the creation of an environment that promotes a sense of familiarity and safety for the young patient. Key recommendations4 include: bringing personal items such as pillows and photographs to hospital; allowing the use of mobile phones and laptops with internet access; facilitation of flexible visiting so as to promote social engagement with peers; flexible accommodation for families; and flexible ward routines such as later waking times, regarded particularly positively by young people. Developmentally apt recreation and entertainment should be integral to the provision of care and not an add-on, as should be the provision of age-appropriate patient information using a variety of mediums. Even in the UK, not all teenagers and young adults are treated in dedicated units; some continue to receive care in generalist settings. Choice of place of care may not be an option when more local care is preferred. Young people with cancer nonetheless have a right to specialist care.4,6 Various models of care exist, from centralised designated care units to hub-and-spoke and outreach models. Technology can be used to harness age-appropriate care for patients and their families. In 2011, a pilot scheme successfully tested a new role, the young people’s community worker, who would provide flexible and personalised support to young people treated in a local adult cancer ward nearer home who did not currently have access to this help. This initiative came from CLIC Sargent,10 another UK charity for children and young people

with cancer and was based on findings from a study of members of TYA cancer multidisciplinary teams throughout the UK, and on feedback from over 200 young people with cancer, who said they needed more non-clinical support to help them through their treatment. The study concluded that high-quality, community-based services were needed to improve young people’s experience of cancer treatment and their long-term outcomes. Through strong advocacy and financial support from charities such as the Teenage Cancer Trust and CLIC Sargent in the UK, CanTeen in Australia and TeenCancer USA, services that are age-specific for teenagers and young adults with cancer can be developed alongside mainstream cancer care, though there is much yet to be done. In the UK in 2014, we witnessed a remarkable awareness-raising campaign that was led by a young man with cancer. Stephen Sutton, a young man with progressive bowel cancer, started a national campaign to raise £1 million for the Teenage Cancer Trust. He garnered support from a plethora of celebrities, including the Prime Minister, and the country as a whole, amazing everyone with his aspirations and ambitions in the face of adversity. Sadly, he passed away in September 2014, but his fundraising campaign continues and has raised more than £4 million. Even more impressive is the way in which he heightened general awareness of teenagers and young adults with cancer, reminding us that young people do get cancer and that their needs are different. Professional development in TYA cancer care Multiprofessional care of teenagers and young adults with cancer is the foundation on which this specialist field of cancer care is built. Specific learning to care for this patient group has evolved significantly in the last 10-15 years as health professionals, young people and charities worked together to determine the specifics of ageappropriate care gaining a greater understanding of age-specific cancers, treatments and the impact this has on the young person and family as a whole. The importance of specialised training and education is now established by authors, policies 3,4,11,12 and organisations such as TYAC (www. tyac.org.uk) and ENCCA (www.encca.eu/Pages/ TYA-Welcome.aspx) all of whom recognise that advances in the care of teenagers and young adults with cancer will be enhanced by improving the knowledge and skills of health professionals. Much of this learning and education is underpinned by a multiprofessional approach, where professionals

TEENAGE CANCER TRUST

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learn alongside each other. As with any specialist area of care, how professionals are educated varies. Conferences focused on cancer in this age group are on the increase thanks to organisations such as Teenage Cancer Trust; TYAC, an organisation for professionals in the UK; CanTeen, the Australian Charity, and ENCCA, a European Research and Innovation Network bridging the divide in health research and innovation for teenagers and young adults with cancer. It is encouraging to see specific plenary sessions on this age group at major events such as the World Cancer Congress and the European Cancer Congress. The international health professions community that focus solely on young cancer care is relatively small, but growing, and many countries are now running their own conferences and study programmes as their experience, knowledge and services develop. In parallel to study days and conferences, specific TYA-cancer-accredited educational programmes are delivered by two universities – Coventry University, UK, and the University of Melbourne, Australia – both of which offer online post-graduate Above and left: Age-appropriate care is provided in a variety of settings. Treatment concentrates on both clinical and psychosocial aspects.

programmes. Coventry University complements the workforce development work of the Teenage Cancer Trust and delivers further accredited face-to-face and non-accredited learning events. The University of Melbourne works in tandem with PeterMac hospital in Melbourne and CanTeen, the Australian charity, in delivering additional non-accredited online learning opportunities. Some of the core elements of the education required for health professionals caring for young people facing the challenge of cancer include: training in the use of developmentally sensitive assessments and psychosocial tools; education on the needs of the family in providing care; the use of TYA-appropriate communication skills, creating stronger relationships between paediatric and adult sectors; and, awareness of the importance of inclusion into age-appropriate clinical trials.4 These educational initiatives can lead to improved outcomes for this population of young people. As more general health professionals appreciate that this group of patients have unique needs, we are seeing greater demand for specific learning. Never was this more evident than when the European School of Oncology invited two UK Nurses, Maria Cable, Senior Lecturer at Coventry University (and author of this article) and Nicky Pettitt, Teenage Cancer Trust Lead Nurse, West Midlands, UK, to present ‘Teenage/Young Adult Cancer – most relevant problems in cancer care,’ held in collaboration with EONS, through a free online lecture in October 2014. This lecture was co-facilitated by another Clinical Nurse Specialist in Adolescent Young Adult Cancer, nurse Pia Riis Olsen of Aarhus University Hospital, Denmark. Delegates attended the hour-long live session from a broad range of countries including Argentina, Belgium, Canada, Greece, India, Jordan, Mexico and Poland – the session is at www.e-eso.net/ egrandround.do?methodcall=details&id=380 It was a great opportunity to present the key issues to a multiprofessional audience across Europe, and indeed worldwide. This shows the relative ease with which interested health professionals can access learning opportunities in this field through the use of technology.

Teenagers and young adults with cancer are potentially missing out on life-saving treatments because few clinical trials are open to them 25

Sue Morgan MBE, Teenage Cancer Trust Nurse Consultant, Sam Smith, Head of Nursing, Teenage Cancer Trust, Maria Cable, Course Director, Teenage Cancer Programmes

The role of nurses Throughout the development of this cancer speciality, nurses have played a significant role and championed excellence in caring for teenagers and young adults with cancer as well as sharing, teaching and developing cancer nursing practice for this age group in a number of ways. A significant development for nurses in this emergent field is the launch of â&#x20AC;&#x2DC;A Competence and Career Frameworkâ&#x20AC;&#x2122; by Sam Smith, Head of Nursing at the Teenage Cancer Trust.15 This document is endorsed by the UKâ&#x20AC;&#x2122;s Royal College of Nursing and is designed to complement any existing frameworks of nursing and also draw on the specific needs of caring for teenagers and young adults with cancer. A robust and methodical process, through leadership from said expert nurses, was key in its development, alongside the opinion and guidance of others with expertise in the fields of practice, education and research. This work is transferable across the professions, and indeed internationally, and is freely available to download at www. teenagecancertrust.org/sites/default/files/Nursingframework.pdf. Additionally, in the past year, EONS and Teenage Cancer Trust jointly held two events that brouht together senior nurse leaders in this field of cancer, to harness a European nursing network that shares mutual interest in improving services and nursing care for this group of young people in their countries.

CONCLUSION Beyond those with specialist interest in the care of teenagers and young adults with cancer, a momentum across the professions, the general oncology community and the world has been fostered and continues to develop. Young people themselves are recognising that they have unique and specialist needs, as are policy makers. Multiprofessional working and learning is key to the development of this movement, and we now see that some professions such as nursing have begun to document what is unique about the approach to care for these patients. Such advocacy and professionalism amongst the nursing profession is welcomed for the benefit of care for young people with cancer, their families and cancer nursing in general. Maria Cable is Course Director, Teenage Cancer Care and Cancer Care programmes, Faculty of Health and Life Sciences, Coventry University Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

Multiprofessional care of teenagers and young adults with cancer is the foundation on which this specialist field of cancer care is built

CA N C E R I N C H I L D R E N A N D YO U N G A D U LT S

Handle with care Understanding the transition towards end of life care in paediatric oncology EONS President-Elect Professor Daniel Kelly reports on the initial findings of ongoing research into appropriate palliative care for children and support of their families Whilst the five year survival rate for many children’s cancers is now over 80%, some children will inevitably relapse or fail to respond to all the treatments available. When this happens they, and their parents and family, will require care tailored to their unique circumstances. This includes specific emotional, physical and social support. However, the research evidence available to guide professionals providing support during the transition from curative to palliative care needs further development. Myself and colleagues at Edinburgh University (Professor Pam Smith, Dr Mia Nelson & Rachel McAndrew) have been researching this issue over the past year. Previous research evidence had suggested that traditional models of palliative care in children may lack applicability in situations where treatment outcomes are unpredictable. This may be particularly relevant in haemato-oncology settings where the condition and prognosis may fluctuate rapidly. A particular challenge is balancing the technical aspects of ongoing (and sometimes futile) treatment with the likelihood of impending death and the need for effective and timely end of life care to be instigated. A range of issues influence how different families deal with such challenging situations including their relationships with health care providers; the nature of communication between themselves and those within their social circle (including

other parents), and the availability of support and information where and when it is needed. Understanding how parents and other family members adapt and cope with relapse and the terminal illness phase, therefore, can help guide health care professionals in their provision of appropriate assistance and care planning. For instance, choice and control are two key concepts that have been found to be essential to enhance parents’ coping strategies. Importantly, emotional distress may occur when parents feel their needs are not being met – or even heard. In this instance, parents may look to each other for support, and may choose to communicate their concerns to each other via mobile phones or chat rooms to help each other. In turn, this may leave professionals unaware and uninvolved (or criticised either overtly or covertly), so increasing their anxiety about how to deal with this challenging situation. There have also been calls for more support to be provided in the home setting but this is matched with concerns about taking a child home towards the end of life, and the challenge of sometimes discontinuing aggressive treatment as this might be considered ‘giving up’. This is likely to be especially problematic when the child has been managed mostly in a hospital setting – which may still be associated with a chance of cure. Professionals, therefore, need to assess the pro-

vision of adequate and appropriate support before home care is considered. In our study, we interviewed parents who had lost a child to cancer – up to ten years ago. They were asked to recall the phase of care that had introduced the likelihood that their child might not survive. We are currently writing up our findings and will report on the study soon. However, it is possible to reveal here that all parents could recall very vividly, despite the passage of time, conversations with individual professionals, the rooms these took place in and professionals’ behaviours and attitudes that signaled bad news was coming. They could also, however, empathise with nurses and doctors in such a difficult situation. The outcomes from this study will be fed back to the unit and professionals involved and we hope to develop awareness training – especially for professionals who lack experience in this important and challenging aspect of paediatric oncology. Such work, if it is to be done well, needs resilience and skill. Anyone who would like to know more about this work can contact Professor Kelly via the EONS office – eons.secretariat@cancernurse.eu.