EONS (European Oncology Nursing Society) Magazine Spring 2016 by European Oncology Nursing Society

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Spring 2016

Supportive care and quality of life for cancer patients

Caring for ourselves and for our patients

Timing, structure and processes for integrating palliative care

Complementary therapies in cancer: a global perspective

Lidia Shapira and Leeat Granek

Mellar Davis and David Hui

Alex Molasiotis

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

Spring 2016

EDITORIAL

David Warr – MASCC President

Production Editor: Jim Boumelha Medical Editor: Catherine Miller Editorial Assistant: Rudi Briké

EONS Secretariat:

haysmacintyre, 26 Red Lion Square London, WC1R 4AG, UK Phone: +32 (0)2 779 99 23 Fax: +32 (0)2 779 99 37 e-mail: eons.secretariat@cancernurse.eu Website: www.cancernurse.eu EONS acknowledges Novartis and Hoffmann-La Roche for their continued support of the Society as sustaining members.

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SIOPE’s new President – Martin Schrappe

When a parent has cancer – EONS Research Grants

EONS Board Member scoops top awards

EONS at ICCN 2015

Young cancer nurses at EONS Advisory Board Meeting

View from another country – Palestine

Celebrating cancer nursing in Oxford

Print run: 1000 copies. Electronic version accessible to 23,000 EONS members. Design and production: © 2016 HarrisDPI. www.harrisdpi.com Printed by: Richline Graphics Ltd. www.richline.co.uk Cover Illustration: Jason Harris Disclaimer 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

SYMPTOM MANAGEMENT AND QUALITY OF LIFE

FOR CANCER PATIENTS

MASCC and a passion for supportive care in cancer

Caring for ourselves and our patients

Timing, structure and processes for integrating palliative care Educational Challenges: Strategies to provide excellent cancer care in underserved populations

Complementary therapies in cancer: a global perspective

Complementary tools to support patients with breast cancer

in that advertisement. 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.

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

EDITORIAL

Supportive care in cancer patients Guest Editorial – David Warr, MASCC President

e are delighted to have the opportunity to partner with EONS for this special issue of the magazine. The Multinational Association of Supportive Care in Cancer (MASCC) is an international multidisciplinary organisation dedicated to research and education in all aspects of supportive care for people with cancer regardless of the stage of their disease. Founded in 1990, MASCC now includes members in more than 70 countries and across six continents. Because supportive care encompasses all aspects of care, it involves a variety of disciplines and specialists, with nurses at the very heart of this support. In this edition, we hope we will provide readers of the magazine with insights and information that will help them develop their skills, add to their knowledge and bring ever better practice to the cancer patients they care for every day. In the introductory article, our incoming President Ian Olver provides an insight into how MASCC, thanks to its wide international membership, has been playing a crucial role in tackling global issues in supportive care by developing treatment guidelines, educational strategies and supportive care research. We go on to look at psychosocial factors and the importance of placing the patient and the family at the centre of the treatment plan. (I understand that EONS Autumn Convention this autumn takes place alongside the 18th International Psycho Oncology Society (IPOS) Congress, so this article may help readers begin thinking more about these issues.) We continue with an examination of the need to integrate specialist palliative care with routine oncologic care – and the growing body of opinion that suggests doing this early on can improve the outcomes of patients with advanced cancer. Finally, we look at social inequalities across our continent and how this produces

high numbers of people who are underserved by our healthcare systems. We examine some strategies to try to address these largely educational challenges and how we can give underserved communities a voice to improve their access to and the effectiveness of their cancer care. I hope you enjoy the MASCC perspective on cancer care and that you will perhaps be inspired to become more closely involved in our organisation. EONS and MASCC share a Memorandum of Understanding which means we work closely together, participating in our respective conferences and sharing knowledge in a variety of forums, and MASCC will be present with a booth at EONS 10 in Dublin this autumn. Our meetings and workshops include many nurses who are keen to drive supportive cancer care forward. To find out more, have a look at our website at www.mascc.org/ The magazine also includes two articles about the increasing popularity of complementary therapies in cancer and ongoing research into the benefits these treatments can bring. The Haven, a UK national breast cancer charity is in the vanguard of using complementary therapies to help with a wide range of problems associated with breast cancer. Alex Molasiotis, Chair Professor and Head of the School of Nursing at the Hong Kong Polytechnic University, provides a global perspective on trials that are working to establish the true health benefits of these complementary therapies. In this issue, you will also find a report on the latest EONS Advisory Board Meeting in Athens, Greece, with an insight into the working lives of young oncology nurses and how EONS will support them in the future. We hope you enjoy reading the magazine. And, don’t forget to sign up now for EONS 10 in Dublin this October! http://eonsdublin2016.com/register-now/

Why it is crucial to address childhood cancer together Professor Martin Schrappe, the new President of SIOPE (The European Society for Paediatric Oncology) describes his vision for the work of his organisation and for cancer nurses working in this important area.

Most people think that cancer in children and adolescents is a rare phenomenon, characterised in Europe by rather high survival rates (approximately 80%). However, we should also consider that cancer is the first cause of death by disease beyond one year of age: this deadly condition affects 35,000 young people each year, and more than 200,000 European childhood cancer survivors have long term side effects of treatment, often severe and having an impact on their daily lives. Moreover, access to quality healthcare widely differs across our continent: a child with cancer in Eastern Europe is 10-20% less likely to survive than one in richer Member States. Finally, the development of targeted and innovative drugs â&#x20AC;&#x201C; increasingly used in adult cancers â&#x20AC;&#x201C; is very slow in paediatric oncology. This, of course, is not acceptable.

The priority of my Presidency is the implementation of the SIOPE European Cancer Plan for Children and Adolescents, which strongly commits us to act and identify viable solutions to improve the cure rate, the quality of cure and the long-term survival of all patients. In it, our multidisciplinary community, including paediatric oncology nurses, called for a European Cancer Plan for Children and Adolescents and identified the following seven objectives for the next decade: 1. Innovative treatments: to introduce safe and effective innovative treatments into standard care; 2. Precision cancer medicine: to use improved risk classification as well as biological characteristics of both the tumour and the patient to help guide decisions on which therapies to use;

3. Tumour biology: to increase knowledge of tumour biology and speed up translation from basic research to clinical care to benefit patients; 4. Equal access: to bring about equal access across Europe to standard care (in both diagnosis and treatment), expertise and clinical research; 5. TYA: to address the specific needs of teenagers and young adults (TYA), in cooperation with adult oncology; 6. Quality of survivorship: to address the consequences of cancer treatment such as long-term side effects, to better understand the genetic background/risk of an individual, and to improve quality of life of childhood cancer survivors; 7. Causes of cancer: to understand the causes of paediatric cancers and to address prevention wherever possible.

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SIOPE will meet these ambitious goals by strengthening its strategic partnerships and steering the Plan’s implementation. We are currently setting up several cross-tumour platforms and projects to address the critical variables influencing success, such as outcome research, radiotherapy quality assurance, development of new innovative paediatric oncology drugs, education and training, ethics and psycho-social aspects of childhood cancer and ‘oncopolicy’ at the EU-level. The SIOPE community is also engaging in the creation of a European Reference Network to facilitate access to cross-border healthcare for childhood cancer patients across Europe via the ExPO-rNet project: www.expornet.eu/. A stronger multidisciplinary cooperation between all types of professionals involved in the care of young patients and survivors is therefore crucial to make this Plan a success. SIOPE supports paediatric cancer professionals to do their

best work in several areas – from treatment to research, from long-term follow up to education – and facilitates regular exchange between professionals, patients, and other stakeholders who can make a difference – such as specialised paediatric oncology nurses. Major role of oncology nurses Experienced nurses have an essential role in young patients’ everyday lives and, therefore, should be part of this common endeavour. We have already established a close cooperation with EONS to tackle common issues, especially via the SIOPEEONS-ECCO joint project ‘Collaboration between nurses and doctors in paediatric oncology’, which demonstrated the need for quality multi-professional team-working. It is widely recognised that multidisciplinary standard care is highly beneficial for a patient-centred approach to cancer care, and this is even more true

When a parent has cancer

for paediatric oncology, a field in which care and research are integrated in daily treatment and care. Paediatric oncology nurses bridge the information gap that often exists between families and doctors, play a major role in the patient follow-up, and are particularly important to provide age-appropriate care in the case of teenagers and young adults – often marginalised and looked after in either children or adult wards. Nurses are part of our common vision to achieve a brighter future for children and adolescents with cancer, and I trust that a stronger multi-professional partnership with nurses, via EONS, will be one of the many initiatives inspired by the Plan. Our children’s lives depend on how we will be able to jointly make this ambitious strategy a reality in the near future. For more information: www.siope.eu, or contact the SIOPE Office (office@siope.eu).

Lucy Grant and Amrit Sangha

A pilot project to enhance nurses’ skill in supporting patients to talk with their families about their illness has been launched with the help of an EONS research grant. The results will be published by December 2016. Here is the story so far. When a parent has cancer, parents and children face many practical and emotional challenges.1 All family members can experience significant distress and are at greater risk of mental health problems.2,3 There is a need for family-centred care. However, patients report that family issues are not routinely addressed and do not feel they are encouraged to discuss their concerns.4 Oncology nurses are key providers of care when a parent has cancer. They often report significant challenges with this role, including a high emotional burden, lack of confidence and skills, feeling

inadequately prepared and unsupported.5 To cope, nurses can distance themselves from patients’ emotional concerns.6 Education and supervision initiatives are needed to equip nurses with adequate skills, knowledge and support to improve quality of care. Building on previous research1,2,7 that focused on developing a three-day education programme, we created a combined education and supervision programme to enhance nurses’ skill in supporting patients to talk with their families about their illness. The UK Medical Research Council guidance for evaluating com-

plex interventions8 was followed, beginning with an examination of theory and research, and consultation with experts. The education programme content incorporates attachment theory, child development and family systems theory. A group supervision component was added following on from the education programme to facilitate the transfer of skills into practice and offer nurses support. We hope to establish the efficacy and sustainability of the programme with a view to rolling it out to other countries. A prospective repeated measures design is employed, using qualitative and quanti-

tative measures pre- and post-programme and following six months of group supervision. Participants will be assessed prior to their participation in the programme and at two further stages – immediately after completing the programme, and six months later after completing six sessions of monthly supervision. The aim would be to: ●● assess the perceived level of confidence, concern, capacity, skills and knowledge in providing supportive care to patients and families when a parent has cancer – participants will complete a 30-item questionnaire, designed specifically for the study. This will Lucy Grant allow the evaluation of

participants’ levels of skill and knowledge through simulated patient roleplays using actors. ●● assess the effect of the programme on professional wellbeing and occupational stress through participants completing the General Survey Maslach Burnout Inventory (3rd edition). This will establish whether group supervision provides support to sustain family-focused care – participants will be interviewed once they have completed the programme. The interviews will explore, using open-ended questions, the participant’s experience of supervision and the perceived effect it had on their ability to sustain supportive care to patients and families when a parent has cancer. We have run five

identical programmes so far, resulting in a sample size of 33 health care professions from varying disciplines. In the first year of our EONS research grant we focused on running the three-day educational programmes as well as the six-monthly supervision sessions. To date we have finished our pre- and post-study days data collection. Our post-supervision data collection will end in April 2016 when the last group has completed their supervision sessions. Role-play data will also be completed at that time. We have interviewed six course participants and are beginning to start analysis of these transcripts. We are continuing to recruit attendees to participate in the interviews. We hope to have a report finalised by September 2016 and begin dissemination through conferences and publication by December 2016. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

EONS Research Grant 2015 – Communication of genetic risk The EONS Research Grant 2015 has been awarded to Memnun Seven, Assistant Professor, Koc University School of Nursing, Istanbul, Turkey, and her team.

the first person in the family diagnosed

factors including perception of relative’s

(proband). However, this duty of informing

risk, feelings of responsibility, and anxiety;

relatives may be distressing or relatives

and sociocultural influences) predict who

may not be properly informed. The purpose

is told about risk for HBOC.

of this mixed method study is to improve our understanding of

2) Using qualitative interviews, describe women’s experiences

Their project will look at: Communication

genetic risk communication

of Genetic Risk For Hereditary Breast

among women with HBOC

Ovarian Cancer From Probands To

and their relatives.

The sample will be

Relatives

The research team

comprised of probands

Explaining the basis for wanting to conduct

proposed two specific aims:

this research, Memnum (pictured right)

1) Using social network analysis:

said: “When a person is diagnosed with

identify which network (geographical

hereditary breast or ovarian cancer

distance, frequency of visual/non-visual

confirmed BRCA1/2 mutations in the

(HBOC), their entire genetic family is at

contact, emotional closeness, relationship

Istanbul University Institute of Oncology

high risk for HBOC and should be notified

affect, and gender and age similarities),

in Istanbul, Turkey. Social network analysis

of their risk. The responsibility for notifying

and non-network factors (disease factors

and conventional content analysis will be

family members of their risk often falls to

including symptom severity; individual

used to analyse data.

in communicating genetic risk to their relatives.

(the persons serving as the starting point for the genetic family study) with HBOC who have

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EONS Board Member scoops two top awards EONS was thrilled that one of its Executive Board members picked up not one but two awards last autumn. Paul Trevatt, who chairs the Communication Working Group, was selected for the Nursing Times Leaders Award in September. The list was selected by a panel of expert judges that included the chief nursing officer for Northern Ireland, and has been endorsed by the chief nurses of all four countries in the UK. ‘Nursing Times’ editor Jenni Middleton said: “This list celebrates a group of the most influential, intelligent and impactful nurses in the profession, and demonstrates the huge contribution nurses and midwives make to defining and implementing excellent patient care. I hope they will inspire others in the profession to have the confidence to achieve their full potential, and highlight to the wider public just

how far nursing has come in the past two decades. “Nurses are no longer junior partners in healthcare – they influence all levels of healthcare from clinical practice to government policy, and patients benefit from their skills and insight.” Paul was selected for his leadership role regarding cancer nursing and the promotion of cancer nurse specialists. The judges said: “Paul has had a tremendous impact on cancer nursing and done much to increase understanding of the role of clinical nurse specialists.” Accepting the award Paul commented: “This is a great honour and I am thrilled that the value and contribution of cancer and palliative care nursing is being recognised not just in patient care, but in academia, research, and in developing and implementing healthcare policy.”

EONS at the ISNCC 2015 Last year’s ISNCC’S conference took place in Canada, from 7 to 11 July; the first time that this event changed from biannual to annual. EONS Executive Board Member (Research), Andreas Charalambous and EONS CEO Clair Watts took part. In total, more than 400 participants from as far apart as America, Asia, Europe and Australia travelled to Vancouver to engage in the conference. The special focus was oncology nursing research, and invitees had the opportunity to present their findings on topics as varied as: supportive care of patients, models of care delivery, cancer patients’ experiences, palliative and end-of-life care, survivorship and integrative medicine.

Paul’s second award came in November when he received the NHS London Leadership Academy NHS Mentor/Coach of the Year award for his role as a clinical supervisor/coach and mentor to NHS staff and colleagues in the voluntary sector.

Andreas Charalambous and Clair Watts report.

Andreas Charalambous and Clair Watts

During the conference, a joint plenary session between EONS and ISNCC was also held. The collaborative session title was ‘Patient and Public Involvement in Cancer Research’. Theresa Wiseman (UK) and Sema Erdem (Turkey) dis-

cussed the topic from the perspective of the researcher/clinician and the patient respectively. The session was packed and extremely well received by those who attended. EONS this year also set up an information booth where nurses had the opportunity to receive materials about the Society, as well as chat with us about the different grants, projects and educational opportunities available in Europe. We were kept busy! The next ISNCC conference will be held from 4-8 September 2016 in Hong Kong, China. The theme is ‘Embracing globalization through leadership and partnership in cancer care’. Former Board Member Professor Mary Wells will attend on behalf of EONS.

EONS Advisory Council 2015 Young cancer nurses shape the future The Advisory Council meeting took place in Athens, Greece, on 27 and 28 November, with 33 delegates from 19 countries participating. EONS President Daniel Kelly and Anna Papadouri from the Hellenic oncology Nurses Association welcomed the participants. One important part of the meeting was a workshop for young cancer nurses (YCN), led by EONS Board Member Paul Trevatt. Cyprus, Estonia, Greece, Iceland, and Portugal were represented. The following principles were agreed for the future of YCNs in EONS: ●● A

need for national cancer nursing societies to consider the role of younger cancer nurses ●● A recognition of the role of social media in promoting networking and communication with younger cancer nurses (Snapchat, Whatsapp, Instagram, Facebook) ●● Reduced fees for younger cancer nurses to attend educational events ●● A young cancer nurses workshop/ meeting at each EONS event ●● A page on the EONS website for young cancer nurses Here, two YCNs that attended the EONS workshop tell us about their working lives, their hopes for the future and what they gained from the experience.

Sgourou Stavroula, Greece Briefly tell us where you work and what your role involves I work in a private General Hospital in the center of Athens, in the Oncology Department. Nurses are responsible for the patients’ everyday hygiene, medication, symptom management, briefing doctors

and in general the right functioning of the department. What are the challenges you feel you face as a young nurse? There is a gap between expectations and reality. Young cancer nurses (YCN) have in their mind the ideal way of patient care and reality comes to overturn it because of the circumstances. This feeling of frustration covers the feelings of joy. Have you met any obstacles to developing your skills/career? To be honest, no. The Directors of Nursing and Human Resources are really receptive to educational programmes in the hospital and also help nurses to attend seminars and conferences. Left to right: Kristina Karp (Estonia),

Have you experienced any notable support or encouragement? For our everyday problems, the support we have is each other. Nurses of the department usually talk about our problems having a coffee before our shift. This has proved very helpful and encouraging. This is because we face the same problems and challenges and we work under the same conditions. What was it like to go to a workshop like the EONS one? When I first heard about the EONS meeting I had no idea what it was about. I was afraid of the unknown. That first

Sara Pereira (Portugal), Sgourou Stavroula (Greece), Chara Kalogirou (Cyprus)

morning (only with three hours’ sleep, because of a night shift) I walked into the meeting full of impatience. I took my seat in the central meeting room and tried to figure out who the other YCNs were. One of them was sitting right next to me (the Cyprus YCN) and we started chatting from the first moment. What did you enjoy about it? What did you learn? It was a unique experience. It was very interesting to communicate with nurses

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across Europe and realise that they have the same problems as we do. Also, as this meeting was held in Athens, my hometown, it was very nice to explain to other colleagues about our history and monuments and feel their genuine interest. What was it like to network with nurses from other countries and professional cultures? Did anything surprise you? It was easy to communicate with nurses from other countries as we are all YCNs. It was really interesting to learn how they work and the differences between health systems. The truth is that they were shocked when they heard that we work almost every weekend. On the other hand, I was surprised when I heard details about their hospital organisation (e.g. different wards for different kinds of cancer) and how many nurses are on each shift. Will you change anything about how you work now and how you seek opportunities to develop your career? Developing my career was always one of my goals. Continuing education is the key to achieve this goal. As far as changing anything about the way I work, I would say many things which are not dependent on me or my colleagues. How will you try to get more involved in EONS and the opportunities it offers for adding to your skills and developing your practice? I have already accepted EONS’ suggestion of being a YCN volunteer and to help with the online site creation. I have also applied for the 9th Oncology Nursing Masterclass: I firmly believe that it is one of the most educational programmes.

Would you recommend this experience to other young nurses? Without a second thought. If someone has that chance, do not miss it!! I believe that every new group of YCNs will bring something different and new. That’s why it is very important for all YCNs to support this EONS project.

Sara Torcato Parreira, Portugal I have worked as a nurse since 2008, at a general hospital near Lisbon and as a nurse at the oncology day unit since 2011. Recently, I became a member of the breast cancer group of the Portuguese Oncology Nursing Association. I consider myself to be a young cancer nurse (YCN), not only because of my age (29) but also because of the relatively short time I have been working in the oncology field. Portugal has been facing an economic crisis for some years. I work for the public health care system and, therefore, I face some contingencies at my place of work as well as in my career. I feel that most of the nurses are tired of working so much with no benefits and that can be dangerous for the wellbeing of a team. It is hard to work in a place with a lack of human and material resources and still try to provide the best patient care. Due to this, some of the older nurses are suffering burn-out and some of the younger ones are unmotivated. I still believe that most of us give our best, but adherence is weak when it comes to participating in extra professional activities related to nursing. For this to happen, motivation is the key and if you work in a place or country that provides you with none, this can be difficult. For me, as a young nurse in Portugal, it is really challenging when you have no career progression and you have to pay for most of the courses if you want to develop your knowledge and competencies – and, usually, you have to use your free time to do it. Luckily, I love my job and I still have hope that, one day, nurses’ efforts will be rewarded and valued. I fear that, due to the lack of incentives, there might be a day when hope will fade, as I have seen happening to some nurses, but meanwhile, I have experienced encouragement from

my family, colleagues and mainly from my supervisor. It was interesting to find that, when I talked with my colleagues at the EONS workshop for YCNs, most of us had similar opinions about the problems and concerns we face – especially when it came to motivation for nursing (extra professional) activities, opportunities for education and working relationships with colleagues and supervisors. It was important for me to get in touch with different people from diverse countries. I became conscious that nursing practice can be really different across Europe, mainly when we talked about advanced practice. Being part of such an event was fantastic because I questioned myself about my country and others practices; and we discussed strategies in order to help find solutions for certain issues, some of them related to YCNs. I also became more aware of the philosophy and goals of EONS and how the members work to support cancer nurses. Reduced fees and the use of tools like the internet, for distance learning, or social networking, in order to share opportunities, are some examples that might help to get more young nurses involved. Being at the EONS workshop made me recognise that Portugal needs to develop some of its nursing practices and that it is necessary to find strategies to motivate Portuguese cancer nurses. Since returning, I have already shared my experience with my colleagues and I wrote a testimony about my experience for the Portuguese Oncology Nursing Association magazine; stressing the importance of knowing and getting involved with what happens around us. I truly recommend this experience to other young nurses because I think that such opportunities increase skills and competencies. I believe that change can start if the word is spread and if individual and team improvements are made. Development can start with each one of us and is very important not only for our patients but also for us nurses, and for nursing as a whole. I would like to thank EONS for the opportunity.

View from another country Nurses in Palestine benefit from the EONS experience In 2014, EONS invited the Palestinian Oncology Nursing Society (PONS) to join with the European community of cancer nurses for two years’ free membership. Here Mariam Samara Awad, Dean of Nursing at Bethlehem University, explains the benefits that this has brought to

With the support of EONS, I have been able to establish PONS –‘The Palestinian Oncology Nursing Society’, the first organisation of its kind in Palestine. Through PONS we have begun to develop and improve oncology care, particularly in the area of palliative care where there is great need. EONS has given Palestinian nurses a tremendous opportunity that will see benefits to patients and their families alike. We have started with 18 members, including nurses from the Gaza strip, and we hope this number will increase and be a means of disseminating up-to-date, evidence-based practice in oncology. The help given shows the ideals of EONS in action: sharing knowledge, educating and promoting research. Nurses in Palestine are further benefiting from EONS with access to the website and magazine. Both enable nurses to keep up to date with research and the latest developments in technology. As a representative of Palestine, I had the pleasure of attending the EONS 30th Anniversary Event at The Royal Marsden, in London, in 2014. The hospitality and solidarity shown to me was so appreciated. Meeting

oncology professionals and the ensuing discussion was particularly fruitful. EONS has also benefited our graduates, with one attending the EONS Masterclass in oncology nursing held in Ermatingen, Switzerland, in March 2015. We chose the head nurse from one of our leading cancer treatment hospitals, Omar Hawamdeh, to attend so that what he learned could be shared with his team. Another exciting major development is the commencement of a higher diploma in oncology and palliative care in 2016. Using the EONS curriculum means we will offer a unique, high quality programme at Bethlehem University. In order to implement the diploma, EONS members have shown their willingness to come to Bethlehem to teach. In addition, lectures will be held via video-conferencing. This diploma has been two years in the making and would not have come to fruition if it had not been for Gerry ‘O’ Hare, clinical nurse specialist in lung cancer, of NHS Greater Glasgow & Clyde, Scotland. Gerry has worked tirelessly liaising between Bethlehem University and EONS. I would also like to pay tribute to Profes-

Members of the Palestinian Oncology Nursing Society join with EONS for the 30th Anniversary celebrations in London in 2014

sor Mary Wells, EONS Past-President Erik van Muilekom and EONS President Danny Kelly for their support. As a developing country with unique challenges, our relationship with EONS is so important. The name of our new society and the word pons is Latin for ‘bridge’. It’s quite aptly named because it enables us to bridge the existing gap in knowledge, research and treatment for the benefit of an entire community with the support of EONS. The acronym PONS is also, by coincidence, an important area of the human brain. From our neuro-anatomy we learn that the pons is a regulator of change, relays signals and messages to other areas and plays a role in the generation of dreams. Additionally, although a small area it performs many automatic functions necessary for life. If our society goes some way to fulfilling parallel functions in the field of oncology we will have truly made great achievements!

JASON HARRIS

cancer nursing in her country.

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Celebrating Cancer Nursing in Oxford – a learning opportunity for all On 4 February 2016, World Cancer Day, EONS President Professor Daniel Kelly gave the keynote speech at a special event to ‘Celebrate Cancer Nursing in Oxford’, UK. The evening was part of a series of lectures, exhibitions, fundraising activities and social events to mark 125 years of nurse education in the city.

Danny began his talk by explaining how Oxford is leading the way in cancer care – and how cancer nurses are themselves at the forefront of this exemplary and groundbreaking practice. Several nurse-led services are provided or are being established, such as a nurse-led bone marrow aspiration service, a nurseled oral chemotherapy service, nurse-led follow-up care and review clinics, and a nurse-led PICC (Peripherally Inserted Central Catheter) service. In Oxford, there is a culture of innovative cancer nursing practice and of supporting cancer nurses to provide optimal care. There are also many opportunities for continuing professional development, including dedicated Cancer Nursing courses at Oxford Brookes University. Furthermore, as Oxford is a centre of medical excellence, working in cancer care in the city provides an opportunity to nurse people receiving cutting edge treatment that they would not receive elsewhere. Danny went on to describe how there is now increasing recognition of the nurse’s role in improving the experience of patients with cancer. He said: “Being a cancer nurse is about assessing cancer patients’ needs and providing care. Forming caring relationships with people with cancer is central to performing those roles and requires a set of skills, based on knowledge and experience, that are worthy of celebration.”

Patient and workplace safety However, there are still important areas for improvement in cancer care. In a close examination of the issue of safety, Danny made the strong case that a ‘safe’ organisational culture is an informed one. Safe work spaces are alert and know where the ‘safety edge’ is; others may ignore or over-rule critical information (a type of ‘deaf ’ effect or avoidant leadership). As an example of ‘silent or deaf ’ organisations, Danny pointed to the case of Mid Staffordshire NHS Foundation Trust in the UK, where a national inquiry found that over 500 reports of concerns from nurses went unheeded. At board/senior management level, strategy, lead-

ership and resilience are key in dealing with “bad news” and staff concerns over safety. There are other aspects of patient safety that exist in oncology that are important too, such as emotional, spiritual, relational and financial safety, he added. In conclusion, Danny returned to his celebration of cancer nursing. He said: “Cancer nurses do a unique job, helping people to live and helping people to die. Nursing people with cancer makes a big difference to patients’ lives, so celebrate your role as a cancer nurse.” You can find out more about nurse education in Oxford, past and present, at http://nursing. brookes.ac.uk/125-years

A first class team: EONS President Danny Kelly meets senior Oxford cancer nurses and educators

MASCC and a passion for supportive care in cancer The identification and management of supportive care needs is an essential component of health care for people with cancer. MASCC, thanks to its wide international membership, has been playing a crucial role in tackling global issues in supportive Liam West

care by developing treatment guidelines, educational

he Multinational Association of Supportive Care in Cancer (MASCC) will be celebrating its 25th Anniversary at its annual meeting in Adelaide from 23-25 June 2016. Founded to promote research and education in all areas of supportive care for patients with cancer, and to increase professional expertise,1 it provides a forum for research and the exchange of information about initiatives in supportive care. MASCC has a tag line which sums up the motivation of its members; â&#x20AC;&#x153;Supportive care makes excellent cancer care possibleâ&#x20AC;?. Supportive care is interpreted in its broadest sense, covering all stages of care, from diagnosis of cancer into survivorship and end-of-life care, and encompassing the prevention and management of physical, emotional, psychosocial and spiritual symptoms and side effects of treatment. The patient is the central focus but supporting their caregivers is vital as well. Emerging supportive care topics The largest global issue in supportive care arguably concerns the disparities in the delivery of supportive care. This can be due to marginalised communities within a country having poorer access to treatment, or disparities between countries, which differ widely in socioeconomic status. In supportive care a major issue has been pain control, particularly the availability of morphine. There are ongoing

strategies and supportive care research.

Ian Olver, President Elect, MASCC

multinational initiatives to address this, such as the GAPRI (Global Access to Pain Relief Initiative â&#x20AC;&#x201C; http://www.uicc.org/programmes/gapri), but there is still much to achieve. Where the availability of cancer therapies is limited, the whole range of supportive care drugs and psychosocial support mechanisms is often lacking. Even in nations of higher socioeconomic status, the high cost of both cancer and supportive care drugs can be prohibitive. This is a major problem which will require ongoing dialogue between the government, regulators and the pharmaceutical industry. MASCC surveyed South East Asian countries about antiemetic usage to compare with data from Europe and the US. Some of the disparities were due to the lack of availability of drugs.2 However, some differences in practice can be accounted for by whether evidence-based guidelines are used to guide clinical practice or not. The promotion of best practice in supportive care, based on evidence, is clearly also a role which MASCC embraces. Another global issue for supportive care is the widespread use of complementary and alternative medicines (CAM), an industry estimated to be as large

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as the conventional pharmaceutical industry. The problem is that, even in using CAM for supportive care, traditional clinical trial evidence of efficacy is often lacking, and much emphasis is often placed on single-case anecdotes. Clinicians treating cancer should encourage patients to report what other than prescribed treatments they are using (not least to help avoid adverse interactions) and they should be prepared to investigate therapies that are in widespread use because they are reported as effective. In supportive care, even in fields that have been well studied in the past, problems remain that require further research. For example, in the field of antiemesis, although major advances have been made in alleviating post-chemotherapy vomiting, it is still difficult to control nausea. There are also niche areas such as prevention of emesis when using high-dose chemotherapy, where improvements are needed. New antiemetic drugs are still being developed. The most recent example is a long-acting NK1 receptor antagonist that will need its place in antiemesis established.3 With newer targeted anticancer therapies, particularly those administered over long time periods, the incidence and pattern of emesis is still not well defined.

The advent of new strategies for treating cancer opens new areas for supportive care research. The toxicities of targeted therapies are a case in point. Much research is being directed, for example, to the skin toxicities, and other organ toxicities are also problematic. These agents are creating a need for new patient and practitioner educational materials to be produced. As mentioned previously, the cost of new agents has triggered discussions about the true value of a treatment. The awareness of the need for good supportive care is paramount when any survival advantage is balanced against any adverse impact of the treatment on quality of life. There are still challenges to be met in the psychosocial and spiritual support required by patients facing disruption to careers, family structures and lifestyles, as well as confronting their own mortality, questioning the meaning of life and illness, and trying to be at peace with their lot. This is where nurses have much to offer, particularly in finding their role within a multidisciplinary supportive care environment. Even ascertaining what a patient needs, and who is best to provide that, requires awareness and communication skills that are subject to great individual variation, just as the patientsâ&#x20AC;&#x2122; needs are varied.

Finally long-term issues of cancer survivorship are currently among the most productive areas in supporting care. An important goal is to be able to predict what issues a specific patient may have, to make it possible to intervene early to modify the impact of those ongoing issues on quality of life. As if that was not complex enough, it is now becoming clear that the stresses on caregivers of patients with cancer can lead to long-term adverse psychological effects, and caring for the carer is an evolving mandate for those delivering supportive care.4 Study groups The heartbeat of MASCC comes largely through the study groups. Each member can choose three groups in which to become involved. There are currently 17 such groups but they are created as the need and interest dictates. For example, there has been a suggestion that a “financial toxicity” study group be formed to explore the issues of high-cost anticancer drugs and the impact of this cost on potential patients. Other groups may change their emphasis with new developments. For example, skin toxicity may once have focussed on extravasation of vesicant cytotoxic drugs, but now of greater relevance are the skin toxicities of some newer targeted therapies and the emerging evidence on their management. Some of the groups will be more attractive to nurses than others. Nurses have engaged in the more long-standing groups, like the antiemetic or

MASCC study groups Antiemetics

Nutrition and cachexia

Bone

Oral care

Education

Palliative care

Fatigue

Paediatrics

Geriatrics

Psychosocial

Haemostasis

Rehabilitation, survivorship and QOL

Mucositis

Respiratory

Neurological complications

Skin toxicity

Neutropenia, infection and myelosuppression

mucositis groups which study side effects that are very much part of the day-to-day management of cancer patients. More recently, this has included the management of skin toxicities of targeted therapies as well as more common symptoms such as fatigue, where nurses have made a significant contribution. Nurses have always been very much involved in patients’ psychosocial issues, for example, which means that they can make practical suggestions for the work of the psychosocial group and where the newer education group could be highly relevant. The output of the study groups has differed markedly, depending on the symptom being studied. For example, over three decades, the antiemetic study group has produced guidelines, with major updates every four years, on the prevention and management of chemotherapy- and radiotherapyinduced emesis. This has been a very productive area, and the guideline updates have been timely, as evidence on the efficacy of two new classes of antiemetics – the 5 hydroxytryptamine3 (5HT3) receptor antagonists and the neurokinin1 (NK1) receptor antagonists – became available and needed to be incorporated.5 There have also been many new anti-cancer drugs introduced of varying emetic potential, where the ideal antiemetic management needed to be defined. Moreover the guidelines have been done in collaboration with the European Society for Medical Oncology (ESMO), which increased their impact. Guidelines have also been very much a focus of the work of the mucositis study group, but more often these highlight where new treatments are needed and where trials have found commonly used strategies lack efficacy. This is useful information, as it provides the impetus for research groups to better define the mechanism of the toxicity in order to propose better strategies for its prevention or management. Most recently, MASCC members have contributed to the ESMO guidelines on Management of Oral and Gastrointestinal Injury, which have updated the MASCC/ISOO Guidelines by incorporating new information, including the mucosal toxicity of newer targeted therapies and newer approaches to enteral nutrition.6 Having a large international membership allows study groups to survey that membership and ask questions that may lead to suggestions for changes in practice or the production of new educational materials. When the psychosocial study group wanted to explore how oncologists saw their role in addressing the issues of the spiritual wellbeing of their patients, they surveyed the

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MASCC membership and gained insights that were subsequently published, so that other members could compare with their local experience.7 Because study groups are comprised of international experts with shared interest, they have also been used to bring together researchers to mount clinical trials. Each group has space on the MASCC website (www.mascc.org) for members to communicate with one another about the work of the group and about the latest advances. The wider membership is alerted about major new initiatives through the Society News to which a link is emailed for each new edition. Study groups play a significant role in the major MASCC event each year, the annual scientific meeting. They suggest speakers and sessions to highlight new advances in their fields, and five or six groups each year host workshops on the day before the main meeting, where specific topics can be presented to smaller groups with opportunity for input from and interaction with the attendees. The study group members are a very helpful source of expertise for reviewing abstracts and educational materials, to ensure that the standard of the meeting and the associated resources remains high. The future for MASCC – and the role of nurses The MASCC group embraces a global view of supportive care. We want to continue to grow and, given that nurses have made significant contributions to education and research in supportive care, we would encourage those with a special interest in this field to engage with us. The future direction of MASCC will depend largely on the needs of the members and what support they want to pursue their goals in supportive care education and research. Study groups will continue to embrace new areas and facilitate experts to come together across the globe. The annual meeting also provides a unique forum to focus on supportive care and is a further networking opportunity. MASCC will continue to seek liaisons with groups like EONS to explore opportunities for mutually beneficial interactions. (For example, in 1998, MASCC formed a relationship with the International Society for Oral Oncology and now they meet jointly and add the expertise of dentists and dental hygienists to the scientific meetings.) There are also opportunities to share expertise in the development of treatment guidelines, educational strategies and supportive care research. Increasing the awareness of the impact of good

Supportive care Just as cancer most often requires multimodality treatment, supportive care requires multidisciplinary input. All of the cancer treatment modalities – chemotherapy, immunotherapy, radiotherapy and surgery – can palliate symptoms and have adverse effects that require management. Specialist clinicians, pharmacists and radiation therapists have significant expertise in the supportive care issues associated with their specialities. They manage both the symptoms from the cancer and the side effects of treatments. Palliative care clinicians have a particular expertise in managing symptoms that are most problematic at the end of life such as pain, dyspnoea and restlessness. However, these skills can be utilised, as necessary, earlier in the course of the cancer. Nurses are a major source of information and support for patients because of the time spent caring for them across the spectrum of their care. Psychiatrists, psychologists, social workers, and spiritual counsellors need to manage often complex psychosocial issues and help patients face the distressing existential issues around the meaning of their lives and illness, and how to achieve peace in the midst of turmoil. Rehabilitation after treatment or in the longer term, may require the input of allied health practitioners including physiotherapists, occupational therapists and speech therapists. Others, such as dieticians, are about maximising wellbeing at all phases of treatment and longer-term survival. Supportive care not only improves the quality of life of patients during all phases of their cancer experience, but can ensure that the optimal treatments can be delivered by alleviating the dose-limiting side effects of anti-cancer treatments.

supportive care is a major step towards encouraging uniform high standards of supportive care in cancer globally. The most effective strategy is to provide a framework wherein all those caring for patients with cancer can develop and share an interest, indeed a passion for supportive care which will translate to enhanced patient care. What MASCC offers to its members Membership of MASCC means reduced rates to the annual MASCC/ISOO meeting, a subscription to the MASCC journal and discounts on supportive care books. There are also guidelines, research tools and educational materials on the website. The greatest opportunity however, is to participate in the study group or groups in your area of expertise. For more information go to http://www.mascc.org/ Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

Caring for ourselves and our patients Here Lidia Schapira, Chair of the MASCC Psychosocial Study Group, and Leeat Granek of the Faculty of Health Sciences, Ben Gurion University of the Negev, Israel, look at the importance of placing the patient and family at Paul Batista

the centre of the treatment plan Lidia Schapira

Leeat Granek and Lidia Schapira

Oncology nurses are the backbone of cancer care. Nurses intuitively know how important it is to recognise and acknowledge what makes each patient unique. As we reflect on the numerous contributions of oncology nurses to the care of the whole person, we are reminded that current approaches and interventions follow the principle of placing the patient and family at the centre of the treatment plan along the entire continuum of illness. To do this, nurses need to be ready to identify and address sources of distress, particularly at times known to be most stressful, such as the initial diagnosis or subsequent transitions in care â&#x20AC;&#x201C; the end of active cancer treatment, or when a cancer relapses. Nurses provide emotional support throughout the entire cancer journey, and address multiple aspects of the illness experience that encompass psychosocial, spiritual and physical domains of care. Oncology nurses are also essential members of the palliative care team, ideally suited for this role given their comfort and expertise in symptom assessment and management. Given the intensity

of the emotional connections between nurses and patients, and the toll exacted by the constant exposure to patients who suffer, it is important to prepare nurses for practice and maintain their psychological wellbeing. Patient- and family-centred care begins with the assumption that the individual patient is part of a wider family structure and that providing the best possible medical and psychosocial care for the patient means incorporating, forming partnerships with â&#x20AC;&#x201C; and when possible â&#x20AC;&#x201C; providing care and support for the significant family members. This model of oncology care is the standard practice with cancers in children while the interdependence of the patient and their family members is more obvious, and can serve as a good working model for innovation in cancer care for adults. Another important aspect of psychosocial care is the ability and willingness of oncology nurses to identify emotional distress in their patients and refer them to treatment when necessary. Research indicates that cancer patients suffer substantial physical and psychological

distress and are at an increased risk for suicide.2-8 We also know that healthcare professionals frequently fail to recognise psychological disorders in cancer patients.9,10 For example, in one study, healthcare professionals identified only one-third of distressed cancer patients who were suffering from severe mental health distress. 10 Identifying anxiety and depression Oncology nurses, who have extensive and ongoing contact with patients and their families, may be in a particularly good position to identify anxiety and depression and make the appropriate referrals when needed. Depressed patients with cancer have worries about their disease, relationships with friends, the well-being of family members, and finances.11 The picture is even more complicated when we think about the long-term impact of a diagnosis of cancer. A recent meta-analysis has shown that anxiety is the most common mental health issue among long-term cancer survivors, a growing segment of our patient population that deserves our

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attention and expertise.12 As time pressures increase, with greater time spent charting or performing tasks that do not involve direct contact with patients, it is sobering to reflect on the vital aspects of the nurse--patient--family relationship. Sitting with a patient who is receiving an infusion, a nurse may skillfully redirect that patientâ&#x20AC;&#x2122;s anxieties, coach them to take their anti-emetics or anxiolytics on a regular schedule, and maintain their innate hopefulness in a better future. Experienced nurses can also help patients shore up their social supports, perhaps encouraging them to seek help from members of a religious community or relatives or friends who mean well, but need specific directions in order to

Given the intensity of the emotional connections between nurses and patients, it is important to prepare nurses for practice and maintain their psychological wellbeing

be useful. Moreover, nurses can perform a vital role in guiding patients to trusted sources of medical information that are vetted by experts, and also help patients debrief after consultations with their oncologists, where treatment options may

have been discussed. Helping patients sort through various treatments by thinking about pros and cons, by helping them sharpen their own questions and discuss their hopes and values, provides an invaluable service that is often not sufficiently

Leeat Granek

ÂŠ Ben-Gurion University of the Negev

Leeat with her mother

Moments of compassion – a personal perspective by Leeat Granek My mother was first diagnosed with breast cancer when she was 34 years old. My older brother was 13, I was 9, and my baby brother was less than a month old. Little did we know that this first diagnosis was to be the beginning of a two-decade journey into the world of cancer. She would be treated nearly continually over my entire childhood and into my early adulthood for relapses, and eventually for metastatic disease that would ultimately take her life. Cancer was a chronic and steady presence in our lives and continues to leave a shadow to this day.1 Over the nearly 20 years of her treatment, we had a lot of contact with oncology nurses. There was the primary nurse who always looked slightly harried, but who was kind, available, and seemed to have superpowers to coordinate my mother’s complicated care. There were the ‘chemo nurses’ who, to my mother’s delight, always commented on her cheerful outfits, asked about her children, and sat with her for a few minutes when she was ‘hooked up’ to the slow-drip. There were the ward nurses who allowed our whole family – my dad and three little children and a dog in tow – to eat takeaway Chinese food and light Chanukah candles in the

waiting room when she was admitted for long stretches of time. And finally, there were the palliative care nurses, who asked about her pain, but also about the books she was reading and the sweaters she was knitting. These nurses provided efficient and stellar medical care, but it was these little moments of compassion and recognition of my mother’s humanity that mattered the most. My mother felt she was appreciated and seen as a whole person with a full life, not just another cancer patient needing an intravenous line. These acts of kindness were a gift for the entire family and helped us deal with illness and loss, for which I remain grateful to this day.

acknowledged by other members of the professional cancer team. Finally, oncology nurses who are on the front line of patient care are witnesses to intense suffering and are exposed to repeated losses. As such, they may be at risk of burnout, compassion fatigue, grief and moral distress. On an aeroplane, we are taught to secure our own oxygen masks first before helping the person sitting next to us. This metaphor is apt for oncology nurses and other healthcare professionals working in the intensely interpersonal and high-pressure environment of cancer care. Without our oxygen – whether

that be social support, hobbies, taking time off, and taking good physical and emotional care of ourselves – we cannot help others. Some examples of self-care might include debriefing sessions,13,14 day-long retreat workshops,15-17 educational sessions on coping,18,19 and week-long residential programmes.19 Strategies on preventing and reducing burnout might also include forming stronger relationships and connections among the healthcare team, providing psycho-education on how to identify, control, and treat stress, and learning how to regulate one’s emotions.20 We count on oncology nurses to

deliver care that is grounded in evidence and generously sprinkled with compassion. The impact of those moments of connection and care leave a lasting impression on patients and their loved ones and help them overcome the suffering and sorrow of illness and loss. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine Lidia Schapira, is based at Massachusetts General Hospital and Harvard Medical School. Leeat Granek is based at the Department of Public Health, Faculty of Health Sciences, Ben- Gurion University of the Negev, Beer Sheva, Israel.

Multinational Association of Supportive Care in Cancer

Timing, structure and processes for integrating palliative care into oncology Mellar Davis and David Hui

Early introduction of palliative care is known to benefit patients with advanced cancer in a variety of ways. But exactly when it should be started and what structures are best have yet to be defined.

Over the past decade, an increasing number of studies have demonstrated that integrating specialist palliative care with routine oncologic care can improve the outcomes of patients with advanced cancer, with benefits recorded for quality of life, symptom control, mood, patient satisfaction, quality of end-of-life care and possibly survival.1,9-12 For the benefits of palliative care to be realised, the service should ideally be introduced early in the disease trajectory. Questions remain, however, about when exactly palliative care should be introduced, and what structures and processes would best serve our patients. In a landmark study by Temel et al., “early” was defined as within eight weeks of the diagnosis of advanced non-small cell lung cancer.1 The palliative care team consisted of palliative specialist physicians and nurses, who followed the patient monthly. The outcomes of improved quality of life, anxiety, depression, quality of end-of-life care (reduced chemotherapy, hospitalisation, emergency department visits) and more and earlier hospice referrals were achieved. A secondary benefit was improved sur-

vival.1 Potential mechanisms for this benefit include better symptom control, decreased rates of depression, enhanced psychosocial support, and less aggressive care at the end-of-life, with lower rates of inappropriate chemotherapy use (which may shorten survival), or the combination of these factors. Further research is needed to confirm the survival benefit and to examine the role of these potential mechanisms. What is “early palliative care”? The definition of “early palliative care” is not universally agreed. Some definitions of “early” include: within three months of the diagnosis of advanced incurable cancer, at the time of failure of first-line chemotherapy, in the presence of certain prognostic signs or symptoms, and more than three months before death.2,12 An international Delphi study is being conducted to identify the optimal timing of introduction of palliative care, and the results should be available later this year. The structures and processes necessary for palliative care have been reviewed in detail elsewhere.12 The success of the Temel study was in part related to a multi-

disciplinary team who followed patients with face-to-face visits on a regular basis and used a guideline to manage patient symptoms and care (National Consensus Project for Quality Palliative Care). Other studies have attempted to demonstrate the benefits of palliative care, but fell short of the mark, possibly because of issues related to the study intervention and design. Certain studies were not multidisciplinary, but involved only a single discipline with limited interventions (educational, supportive, etc.), and were not primarily involved in the direct care of patients. Other interventions were multidisciplinary but were consultative only and highly dependent on the oncologist or primary service to implement recommendations.2 Methodological issues included the lack of a definition of “usual care” for the control group, imbalances between groups, selective recruitment and “gatekeeping” by referring physicians.2 Studies were often underpowered and attrition was high, biasing results. Methods of accounting for missing data were often poorly done. In some studies, outcomes were measured before the full impact of palliative care could be real-

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â&#x20AC;&#x2DC;For the benefits of palliative care to be realised, the service should ideally be introduced early in the disease trajectoryâ&#x20AC;&#x2122;

ised.3 It may take four months or more of cesses, three related to outcomes and four regular outpatient follow-up to achieve related to education. Upon further valithe full benefits of palliative care.9 dation, these indicators can be useful to Finally, the economic benefits of palliaassess programmes and identify opportutive care have not included the impact on nities for improvement. family finances (see box).2 It is estimated that nearly 40% of families spend their life savA classification of palliative care cost ings on the care of a loved one benefits should include four domains: with cancer.5 Assessing integration through the Delphi process What are the structures and processes necessary for integration? An international expert panel recently developed a list of 13 major and 30 minor indicators to assess integration of oncology and palliative care through a Delphi process.14 The 13 major indicators are shown in Table 1, and include two related to structure, four related to pro-

1. 2. 3.

A 2010 survey of cancer centres in the US reported that 98% of National Cancer Institute (NCI)-designated cancer centres and 78% of non-NCI designated cancer centres have palliative care services.8 Among the NCI-designated cancer centres, 92% had an inpatient consultation team, 59% had an outpatient palliative care clinic, 26% had dedicated acute care beds, and patient medical factors, such as quality and quantity of 31% had an institution-operlife and symptom distress ated hospice. Subsequently, an international survey by patient non-medical factors such as workplace the Multinational Association productivity and accommodations by employers of Supportive Care in Canfamily medical factors such as the quality of life for the cer (MASCC), in conjunction family and the impact of the patientâ&#x20AC;&#x2122;s cancer on family with the European Society for Medical Oncology and health, and European Association of Palfamily non-medical factors which includes caregiver liative Care, was published workplace and productivity and school performance of in 2015.6 Sixty-two palliative family members.4 care programmes responded. Most programmes (80%) had inpatient mobile consultative

services, and nearly 62% had inpatient acute care beds. Less than half (49%), however, had outpatient clinics. Half of palliative care programmes are therefore not structured to meet the needs of advanced cancer patients early in the course of their illness. Most programmes were multidisciplinary, and consisted of two full-time-equivalent physicians. Approximately half required physician and nurse training or certification in palliative care. Most programmes (75%) provided some type of continuity, defined as following that patient in the medical system for â&#x2030;Ľ4 weeks or throughout the course of illness. On the other hand, one quarter did not provide continuity. Outpatient clinics were held a median of five days a week (range 0.5 â&#x20AC;&#x201C; 7 days). Only 38% saw patients in the oncology clinic, either exclusively or in addition to

dedicated palliative care clinics. Hence a multidisciplinary approach with proximity and convenience for patient and family occurred only in a minority of programmes. The lack of outpatient clinics, and the way these clinics were structured, suggests that there remains room for improvement in the delivery of palliative care services. How well is palliative care integrated into oncology and how do oncologists view the integration of palliative care into their practice? A companion survey to the one above sponsored by MASCC was published in 2015.7 Of the 183 programme respondents, 38% came from comprehensive cancer centres (ESMO or NCI). The majority of oncology programmes (83%) have some type of inpatient oncology care available. Most had dedicated inpatient oncology beds (84%) and inpatient palli-

Table 1. Major indicators of integration of oncology and palliative care14 1

Presence of palliative care inpatient consultation team

Presence of palliative care outpatient clinic

Presence of interdisciplinary palliative care team

Routine symptom screening in the outpatient oncology clinic

Routine documentation of advance care plans in patients with advanced cancer

Early referral to palliative care

Proportion of outpatients with pain assessed on either of the last two visits before death

Proportion of patients with two or more emergency room visits in last 30 days of life (negative indicator)

Place of death consistent with patientâ&#x20AC;&#x2122;s preference

10 Didactic palliative care curriculum for oncology fellows provided by palliative care teams

ative consultative services (72%) but less than 62% had outpatient clinics (supportive or palliative care); only 39% stated they had dedicated inpatient palliative care beds. Barriers to palliative care services were largely budgetary limitations (55%) and lack of availability of trained palliative specialists (40%); some complained of poor reimbursement for services (32%). Only 5% identified a lack of evidence about the benefits of palliative care as a barrier to providing services. Most felt that the effectiveness of palliative care (63%) and quality of palliative care (69%) had improved over time. All oncologists felt strongly that palliative care services benefited patients with cancer; however, only 17% of those surveyed felt that their institution was likely to increase palliative care funding. Most were neutral about expanding palliative care staff. This may be because palliative care does not generate revenues to the extent that cancer care does, but is a value-based discipline which diminishes indirect costs for the medical system. Conclusions In summary, the full benefits of palliative care require outpatient interdisciplinary services which follow patients longitudinally over many months. Thus, patients should be seen early in the course of their advanced cancer. Direct care of patients is important, and the full benefits may extent to the end of life. Unfortunately, many existing palliative care programmes are structured as crisisintervention services. Most cancer care programmes see the value of adding palliative care to cancer care, but there is less enthusiasm for investing in services. Further research is needed to identify the optimal time to introduce palliative care and the best structures/processes to improve outcomes and to overcome barriers to implementation.

11 Continuing medical education in palliative care for attending oncologists Details of the references cited in this article can be

12 Combined palliative care and oncology educational activities for fellows/trainees

accessed at www.cancernurse.eu/magazine

13 Oncology fellows have routine rotation in palliative care

David Hui is Chair and Mellar Davis Vice-Chair of

the MASCC Palliative Care Study Group.

SUPPORTIVE CARE

Educational Challenges: Some strategies to provide better cancer care in underserved populations Paz Fernandez-Ortega, Judy Phillips, Manon Lemonde and Massey Nematollahi

Differences in healthcare, whether due to unequal income, to age, education or social factors, remain one of the most important challenges for care providers. At the 2015 MASCC meeting in Copenhagen, the Education Study Group hosted a workshop on providing cancer care to underserved populations. This article is adapted from that workshop. Social inequalities in health are those systematic differences that are socially produced and unfair. There are many underserved cancer patients in Europe today due to a variety of complex causes, among these are low income, ethnic minority discrimination, cultural and educational differences and lack of support during and after treatment. Studies of the cancer patient experience have found that the young and very old, ethnic minority patients and women report worse experiences in the quality of health care, greater healthcare inequalities and lower patient satisfaction. To reduce inequalities it is necessary to improve in each of the following key areas: ●● educational opportunities ●● income distribution ●● health-related behaviour ●● access to healthcare. There is a wide variance of income between European countries in the West and East, North and South (see map), and further economic differences within countries and regions. In recent years two new factors must also be considered: First, refugees are coming from the Middle East and from Africa – do we integrate these patients into our National Health coverage, and if so,

Political Map of Europe

There is a wide variance of income between European countries in the West and East, North and South, and there are further economic differences within the countries and regions. This is reflected in disparities in cancer outcomes.

how? Second, the economic crisis has had a huge impact on cancer patients, particularly on women, the elderly and the poor. How low- and middle-income levels affect cancer services in the European Nations: ●● In low-income European countries there is little awareness that cancer is treatable. There are also inadequate pathology services for diagnosis and staging, and no treatment availability (radiotherapy and drug treatments). ●● In middle-income countries there is latestage presentation of disease and limited data collection. There is poor provision of community access to early detection, diagnosis and treatment, and low prioritisation of cancer control programs within the health-care system. Elderly people with cancer In Europe, getting old presents many

complex challenges to the individual and to society: These become even more burdensome when a person has cancer; the social security system is under pressure, because there is a decreased younger population in the workforce to pay for the retired. Some of the barriers that older people face include understanding complex diagnoses and higher dependence on relatives. They must often travel to receive chemotherapy (with limited transportation options and cost implications), and spouses are older and less able to be effective care-givers. Other wider social issues are also a factor: with families getting smaller there is more cost for complex care responsibilities at home; public misconceptions about cancer make people reluctant or unwilling to seek care when early symptoms occur; treatment is too costly for patients to afford (out-of-pocket payments are highest in the poorest countries in Europe).

Globocan data - IACR

High incidence 80% non advanced stage Many survivors

Evolving solutions for older people living with cancer Technologies may help, with portable ultrasounds, x-rays, ECG machines, and incentive spirometers, which will facilitate transportation and save time and money. Strategies for care providers may also include education and training as a way to effectively meet the challenges involved in caring for the aging population; geriatric assessments are another key tool. Legislation on opiates/opioids, palliative care coverage and provision of medications must also be addressed. Challenges in the healthcare system In Western Europe, there is a shortage of professional cancer nurses and oncologists due to financial constraints, and an issue around ageing health professionals. Patient/nurse ratios differ greatly from country to country. For example, WHO reported in 2004 nurses ratio across two countries as follows: ●● Finland – 1,200 nurses per 100,000 population ●● Spain or Portugal – 500 per 100,000. The contrasts are stark: regions with the highest provision can have 10 times as many per capita than those with the lowest provision, and further regional differences exist within many countries. Many factors are also pushing nurses to leave their own countries, including: low pay, poor career prospects, political instability and social violence. The strongest push factors encouraging nurses to leave are currently found in Luxembourg, France, Switzerland, Portugal and Spain.

SOCIO-ECONOMIC FACTORS 80% advanced stage at initial Lack of data – cancer underappreciated High mortality

Screening When it comes to cancer screening programmes for breast, cervical and colorectal cancer, people in poorer inner city neighbourhoods are being screened at much lower rates than people in the richer suburbs. These people are under diagnosed. Among a number of factors influencing this is the fact that poorer self-assessment of health is higher in those of lower socio-economic status, including

SUPPORTIVE CARE

immigrants. (In 2013, it was found that Eastern European immigrants in developed countries underutilise breast cancer screening, and one of the possible causes could be insufficient knowledge to make decisions to participate in prevention.) Health literacy and communication Health literacy is considered the single best predictor of the patient’s health status. It is defined as the capacity to obtain, interpret, and understand basic health information and services and the competence to use such information and services to enhance overall health. Poor health literacy puts tremendous adverse financial burdens on healthcare. For example, in the United States, the healthcare costs of a patient with limited literacy is around four times that of those who have adequate health literacy. Communication is of great importance for people diagnosed with cancer. As the world becomes more racially and ethnically diverse, literacy, cultural and economic sensitivities, language, hearing, vision, and nonverbal communication are some of the issues we should consider in our communication with cancer patients. Providing compassionate care is the first step. We need to listen carefully and provide emotional support. Eye contact is imperative. Through compassionate care, you will establish a trusted relationship. An initial assessment of the patient by the healthcare professional should include: 1. Can the patient read, if so what level? 2. Are there cultural and economic issues? 3. Are we saying what we mean? How are we saying it? Do they understand our jargon? What is the patient’s primary language? What are their non-dominant local languages? 4. Can the patient hear? 5. Can they see? 6. Be aware of non-verbal communication – are they frightened? 7. Is the person too fatigued to learn? 8. Is the patient so worried about financial issues that they cannot comprehend anything? 9. Does the patient have memory deficits? If so, write things down in an

What is Community-Based Participatory Research (CBPR)? The theoretical and practical approach Fascinating social health research is occurring particularly on health promotion and disease prevention. However, despite the success of this research, the interventions often show low effectiveness when applied as practice. This may be due to the following: 1.

Traditional research institutions and communities differ in their approach to a problem – traditional researchers use different “tools” to address health promotion and disease prevention;

Communities are often not consulted on the design and conduct of research projects;

Communities often do not have access to research findings or they disregard the research findings as “not applicable” to them, and

Academic-community partnerships, when it occurs, often favour the biomedical model and academic expertise rather than participatory research and experiential wisdom.

Community-based participatory research (CBPR) attempts to address these problems. It begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities1. “Community-based research” is rooted in the community, serves a community’s interests, and frequently encourages citizen participation at all levels. It aims not merely to advance understanding, but to ensure that knowledge contributes to making a concrete and constructive difference in the world2.. (CBPR originated in the 1940s as action research initiated particularly by Kurt Lewin and other European social scientists.)

understandable way. 10. Are they elderly? 11. Do they have multiple co-morbidities? Often fear, anxiety, medications, poor nutrition, fatigue, low education and financial worries mean the patient cannot take in anything else. Healthcare professionals must alter how they teach people who are overwhelmed: speak slowly, teach back, encourage questions, use plain language and examples. Use technology only if appropriate. Do not complicate things. Think about readability of patient materials – length of words and sentences etc., and use visuals relevant to the text. Often there are networks that can

help patients understand and navigate this new world. These may be advocacy groups, peer groups, community collaboration (see box), churches, barbershops/ beauty shops, and other activity groups such as bowling, in-home shopping, library and parent groups. Patients’ abilities to understand what is going on with regard to their healthcare makes a huge impact on their outcomes. Paz Fernandez is Chair of the MASCC Education Group, Judy Phillips and Manon Lemonde are Co-chairs, Massey Nematollahi is a group member. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

Complementary therapies in Research to develop evidence on complementary and alternative medicine-related therapies has been slow to take off. This is gradually changing, with well-funded trials designed to define the true health benefits from these therapies.

Alex Molasiotis

t is now more than 10 years since the highly cited report on the use of complementary and alternative medicine (CAM) in cancer, with the contribution of many EONS national societies, was published.1 It showed that one-third of all cancer patients in Europe used CAM, primarily to manage symptoms and improve the impact of the cancer/ cancer treatment on their quality of life. Since then, we have seen a huge growth in the use of CAM, improvements in access to CAM-related therapies and delivery of some of these therapies through national health services in several countries. It is estimated that in the UK alone the expenditure in CAM is well above €260 million per year, and in the USA it is more than €30.5 billion according to the 2007 National Health Interview Survey carried out by the Centers for Disease Control in the USA. In Asia, this use is even higher, as patients are well accustomed to traditional healing practices that are not only embedded in their cultures, such as traditional Chinese medicine and acupuncture in China, but are also more affordable. In China, for example, there are state-funded hospitals specifically for traditional Chinese medicine. Australia, with many of its population being of Asian origin, shows consistently high numbers of users in the literature. Many health insurance companies, both in the East and the West, now cover a number of complementary therapies, recognising there are health gains from such therapies. Large well-conducted trials Until recently, however, the research evidence around such therapies has been of poor quality that in most cases does not allow for strong recommendations

to be made and conclusions drawn. This is slowly changing with the appearance of large and well-conducted trials, funded from mainstream competitive funding bodies. We have recently published the largest acupuncture trial in managing fatigue in breast cancer patients (n=302)2 showing significant and clinically important improvements in fatigue, psychosocial aspects and quality of life in the acupuncture group. A new trial, consolidating research of several years, showed that a ‘package’ of symptom education, breathing training, cough suppression exercises and acupressure was effective in managing the respiratory distress symptom cluster (breathlessness-fatigue-cough) in lung cancer patients,3 giving more options to patients in terms of their symptom management in a very limited field of knowledge. This work has now been funded by the UK’s National Institute for Health Research to run a large national trial starting this year. Several other ‘good’ trials, providing a high level of evidence, are appearing in the literature, such as on mindfulness training; herbal medicines; mind-body interventions, etc., and there is more evidence to come. Establishing priorities Do all CAM therapies work? Definitely not. Do we need to have research evidence for all of the CAM therapies used? I do not think so, as funding for research is limited and competitive, with CAM research only receiving a tiny percentage of the available funding. Also, some therapies, such as massage, may not necessarily need to be tested, as they are of ‘low’ risk and enjoyable to patients, and we must prioritise therapies that really need to be further investigated and funded, particularly if there

SUPPORTIVE CARE

cancer: a global perspective are safety or public health risks with their use. We need to understand more about the mechanisms behind the effects of some of the prominent therapies, and whether there is a strong placebo effect (therapeutic or not). A number of ‘placebo’ (sham) approaches used in current trials are questionable and perhaps not appropriate, and this is an area we need to develop further in order to obtain more reliable results from trials. We should also not forget that many CAM therapies offer some of the basic tenets of care – touch, talk and time – which the specialised but fragmented care we offer in our current health care systems does not offer well. Using CAM can also lead to patients feeling more in control of their health, and this

Using alternative therapies can lead to patients feeling more in control of their health and this can itself be therapeutic.

element of empowerment can also be therapeutic. Not only should we do more around establishing better evidence for CAM, we also need to focus on improving communication with patients and be more ‘accepting’, as health professionals, of the patient’s choice. Training plays a key role in this and can allow health professionals to guide patients and have appropriate discussions with them about CAM use. A good example of such training is in Hong Kong, my adopted home, where all nursing degree curricula include a minimum of 60 hours of traditional Chinese medicine practice and a minimum of two taught subjects before registration, in order to allow nurses to understand the basics of this traditional Chinese medicine and enhance the related communication with patients. Alex Molasiotis is Chair Professor and Head of the School of Nursing at the Hong Kong Polytechnic University Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

Complementary tools to support patients with breast cancer

Recovery from breast cancer and coming to terms with the long-term effects of treatment remains a complex process. The Haven is a UK charity providing personalised care and support to help people through the experience of breast cancer. Dr Caroline Hoffman who leads a team of specialist nurses, therapists and researchers across all five Havens, speaks to EONS Magazine. How does acupuncture help breast cancer sufferers?

The Haven is a national breast cancer charity that provides centres and programmes in the community providing people with emotional support, and help with the side effects of breast cancer treatment and creating a healthier lifestyle. We do this in a variety of ways – through individual psychological support, individual complementary therapies, personalised nutritional therapy and healthy eating workshops, exercise classes to improve mobility, image workshops, lymphoedema awareness, emotional support groups and emotional support for family and friends. We also provide mindfulness-based stress reduction programmes and programmes to support patients at the end of treatment. We also offer ongoing support for people with secondary breast cancer.

Acupuncture is part of a remarkable system of medicine that has been practised in China for thousands of years. With tests such as functional magnetic resonance imaging (fMRI) scans, we can now see the impact of inserting acupuncture needles has on different parts of the brain. Acupuncture can help with a wide range of problems associated with breast cancer. The way it works in helping to rebalance the body, means that it can help reduce specific symptoms. There is a growing body of research to show the effectiveness of acupuncture in cancer patients, including areas of fatigue, nausea and vomiting, menopausal symptoms and pain. It has a relaxing effect on the body, and patients often report feeling more calm and less anxious,

and say that they sleep better after a treatment. Acupuncture has also been shown to improve immunity, which is potentially beneficial for people with breast cancer. It may help with a wide variety of symptoms, although there is not necessarily rigorous research to back this up. What part do you feel that acupuncture plays in the overall treatment plan of a breast cancer sufferer?

It would be ideal to have acupuncture available to support people with breast cancer at the various stages of living with and beyond cancer. Treatment to relieve nausea and vomiting from chemotherapy treatment is one of the potential benefits. It can also be used for anxiety and stress, to support a variety of side effects across a treatment pathway and also to help people recover and reha-

Colin Baldwin Photography Ltd

What does The Haven offer that many other conventional health providers do not?

bilitate at the end of treatment. Acupuncture used in this integrated way can be a vital tool for helping people get through the experience of breast cancer more easily. How long is the course of treatment – and what does it involve? A traditional course of acupuncture treatment involves six sessions, but the majority of the improvements happen in the initial sessions, so to offer three or four treatments when addressing a particular problem is often enough. Up to 12 sterile disposable very-fine-bore acupuncture needles are used per session, and according to the needs of the patient. An acupuncture treatment takes up to one hour, allowing time for an assessment, the insertion of the needles, and time for the patient to relax afterwards. Needles are left in the patient for between 20 to 30 minutes. The needles are generally painless on their insertion, although sometimes mild sensations arise as they do their work. Patients may need to be prepared to remove their clothing so that needles can be inserted into the appropri-

ate part of the body. The body can then be covered around the inserted needles to keep warm. Are people ever resistant to the idea of having acupuncture? Too many needles in the course of breast cancer treatment can be off-putting, but it is important to understand that the kind of needles used in acupuncture are extremely fine and small compared to needles used to take blood or give drugs. If patients don’t want acupuncture for this reason, we often suggest shiatsu or reflexology as an alternative. Whilst there is less research available regarding the effectiveness of these compared to acupuncture, they have both been very well received among people affected by breast cancer for a variety of problems. What would you say to an oncology nurse who is sceptical? Acupuncture is a safe treatment when given by a well-qualified and experienced acupuncturist – training in the UK, for example, is generally a three-year course.

Healthcare professionals may do shorter courses because of their previous healthcare experience. If an oncology nurse is sceptical about the benefits, I would encourage them to have a treatment for themselves. What other complementary therapies do you consider helpful? We have found that the most helpful and popular of our individual therapies are: nutritional therapy, counselling, acupuncture, aromatherapy massage, reflexology, shiatsu and hypnotherapy. The most popular for groups and classes are gentle yoga, Tai Chi, Nordic walking, emotional support groups, mindfulness-based stress reduction, body image, and healthy eating workshops. These are popular because they either work with the individual side-effects of breast cancer treatments, or they give emotional support and build confidence, and help people find new ways to move forward following diagnosis and treatment. Find out more at www.thehaven.org.uk

The Haven: a welcome relief and escape for breast cancer patients Here a breast cancer survivor, Adele Gopal, testifies to how The Haven helped her take control of her life after treatment. The medical profession heals physically with surgery, chemotherapy and radiotherapy, but emotionally I was devastated, my entire world had crumbled around me, and The Haven helped pick up the pieces. It is an oasis of peace, support, friendship and love. A place I can go and be myself without having to put on a brave face. Everything I have learned there has had a very positive effect and has enabled me to take control of my life again. On diagnosis, I became this small frightened person, stripped of all my confidence, completely unrecognisable to myself. I was swept along into an alien and

terrifying world of cancer, feeling utterly wrenched physically and emotionally. I was staring death in the face at a time when I was at my most vulnerable. The emotional fallout is like a nuclear winter. The side effects of cancer treatment are debilitating to say the least, but the many treatments that are available at The Haven afford welcome relief and escape. We watch each other arriving for our therapies – often broken and defeated, but seeing us leave is an entirely different story, walking tall, confident, smiling and able to cope with anything our cancer world throws at us. I’ve had reiki, acupuncture, learnt Emotional Freedom Techniques (EFT) and a whole host of other treatments, none of which I could have afforded and all of which have made an enormous

difference to my health and wellbeing. All these therapies are given in this remarkable place, which resembles a spa, where I feel safe and protected. The focus is always on you and for many of us it’s the first time in our lives that we have put ourselves first. Family life is so hectic, and even in illness Mum still has to run the show. All the therapies have made a huge difference to me, but acupuncture has been a revelation. The difference this made to my energy levels was astounding. I was so much calmer – something my family was extremely grateful to The Haven for. I’m now six years on in my journey with my breast cancer and I thought I had fully recovered until I visited The Haven. I realised then how much further I still have to go, but I’ll get there with The Haven’s help.

THE EUROPEAN ONCOLOGY NURSING SOCIETY PRESENTS:

EONS

IN PARTNERSHIP WITH:

Two days of specialist cancer nursing educational workshops, scientific news, and networking opportunities at the Dublin Aviva stadium. For more information visit: www.eonsdublin2016.com

BALANCING HEALTH CARE NEEDS IN A CHANGING CONTEXT