EONS Magazine Winter 2013 by European Oncology Nursing Society

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Winter 2013

Diversity in cancer care â&#x20AC;&#x201C; the importance of transcultural nursing

Views from the ranks: veteran and freshers / Views from Siberia

Smart diagnosis: New technologies bring supportive cancer care up to date

Mark Johnson

Jim Boumelha

Stein Kaasa, K. Sand and S.X. Raj

Contents Editor-in-Chief: Helen Oswald Executive Editor: Clair Watts Art Editor: Jason Harris Production Editor: Jim Boumelha Editorial Assistants: Catherine Miller, Rudi Briké EONS Secretariat:

Winter 2013

EUROPEAN CANCER CONGRESS SPECIAL

European Cancer Congress 2013 Diversity in cancer care – the importance of transcultural nursing

Avenue Mounier 83, 1200 Brussels, Belgium Phone: +32 (0)2 779 99 23

An interview with EONS’ new President – Erik van Muilekom

Prestigious Pezcoller Prize goes to a nurse for the first time

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

9 EONS Lifetime Achievement Award

Xerestomia - an ‘orphan’ waiting for adoption

Views from the ranks: veteran and freshers / Views from Siberia

EuroPEPs – Putting evidence into practice

My Congress

Writing on the wall

Richline Graphics Ltd. www.richline.co.uk

Cancer diagnosis in young people – what do we know?

Cover Illustration: Jason Harris

Young people require specialist nursing care

Disclaimer

Nurses’ role in robotic surgery

Together we are better

The views expressed herein are those of the authors and do not necessarily reflect the views of the European Oncology Nursing Society. The agency/ company represented in advertisements is solely responsible for the accuracy of information presented in that advertisement. The European Oncology Nursing Society (EONS) does not accept responsibility for the accuracy of any translated materials contained within this edition of the EONS Magazine.

Smart diagnosis: New technologies bring supportive cancer care up to date ‘This house believes...’ The European Oncology Nursing Society is celebrating its 30th birthday!

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

EDITORIAL

European Cancer Congress 2013 by EONS President Erik van Muilekom

s I’m sure you know, the European Cancer Congress (ECC) took place at the end of September in Amsterdam. EONS played a prominent role in the organisation of this multidisciplinary and multi-professional meeting which included a nursing programme with 32 session/debates/lectures and, of course, more than 60 posters. We were very happy to welcome 18,500 participants including 550 nurses. If you weren’t able to attend this one, hopefully you’ll make it to the next. We hope this special edition of the EONS Magazine will give you a flavour of this key event in the oncology calendar.

Why go to a conference like this? My first oncology conference experience in the beginning of the ’90s took place at the same venue and in the same city as this one. It was overwhelming, all these people, sessions, subjects, exhibitors and activities. It is still fresh in my mind, it made a huge impression on me and influenced my further career as an oncology nurse. In 2013, my overwhelming impression is still the same, not only for me, but for a lot of colleagues from around Europe whom I met during this conference. Attending a conference like this sometimes feels more tiring than working, but there is so much that one gets out of the experience. I really believe that both sides of the conference are very important: the scientific part and the social part. We get inspired, gain new ideas for daily practice and get motivated to improve care for patients with cancer. On the social side, it is always nice to meet old friends, make new ones and have some fun. We were lucky, a lot of EONS members found the EONS lounge in the main hall of the conference centre.There they could drink a cup of

coffee, prepare for a session, search for the right room - but even more important, relax, network or have a chat with other colleagues and EONS members from around Europe.

A special selection In this edition of the magazine, a special selection has been made of some of the most interesting and important subjects for the oncology nursing community. I am very happy that, as a result of all the hard work of the magazine team, we can offer all our members who were not able to attend an impression of what was going on in Amsterdam - and for those who were there, the possibility to relive the experience or catch up on any items they missed. The great advantage of the ECC is the multidisciplinary and multi-professional character of the event. A wide variety of topics are presented organised by tumour type or therapeutic options. On the other hand, it is also of great value that EONS has retained its nursing-only track, offering a programme specifically dedicated to oncology nursing. We did our best to involve and invite as many speakers and nursing experts as possible from different European countries and I think we succeeded.

See you later this year in Istanbul! This brings me to this year’s meeting; EONS-9, between 18 and 19 September in Istanbul, in collaboration with the Turkish Oncology Nursing Society. This will be a meeting specially dedicated to oncology nursing in Europe, so we will create a programme which covers all aspects and new developments in oncology care which are important and interesting for all nurses around Europe. I hope you enjoy reading this magazine and hope to meet you at our conference later this year.

Erik van Muilekom, is Clincal Nurse Specialist at the urology department of the Antoni van Leeuwenhoek-Netherlands Cancer Institute Amsterdam, The Netherlands.

Diversity in cancer care - the impor Professor Mark Johnson opened the oncology nursing programme at ECC. Here he highlights some of the key points he made about the role of identity in cancer care. In my talk, I tried to review some of the evidence and ‘good practice’ that I have come across during my years of research on the topic. It is clear that as we develop our understanding of the human genome and try to work towards “personalised medicine”, we do need to have a better idea of how to deliver personalised care. This does not just mean looking at clinical indicators, but means that we need to take a holistic view (something most nurses are quite passionate about) which should, as the conference theme suggested, be ‘multi-disciplinary’. By this, however, I mean that we need to look outside the cultures of the clinical professions and bring in the social

Good Practice ●● Create a healthcare environment that is welcoming of diversity; ●● Develop effective communication with inequality groups using appropriate terminology to address them; ●● Develop a knowledge base of local and national resources for inequality groups in order to signpost patients to longer-term support; ●● Diversity should be integral to Continuous Professional Development; ●● Involve patients’ family and carers in their treatment and care.

sciences, the arts and humanities and an understanding of faith or religion, as well as language and culture. Food too, as everyone knows, is important – some people come from very different dietary traditions, including vegans and vegetarians, and others are allergic to foods like milk that we take for granted in Europe as staples. Nursing care needs to look at the patient as a member of many different ‘sets’ of identity. While no-one can expect to know everything about all the cultures we encounter, we need to know what sorts of questions to ask, and be prepared to spend time finding the answers to them for each of those for whom we offer care. Someone once said to me “I don’t discriminate – I treat everyone the same”. Unfortunately for them, perhaps, we are all, in fact, different – and even cancer ‘speaks all languages’. There are indeed, as the last issue of the EONS magazine reminded us, many ‘rare’ cancers. As a class of disease, cancer too might not discriminate, but increasingly we are beginning to realise that it does not treat everyone the same, and everyone needs specific treatment: we are all different and we all deserve equal treatment! Prof. Johnson was the first Professor of Diversity in the UK. His journal, Diversity & Equality in Health & Care www.ingentaconnect.com/content/rmp/dehc tion www.europeantransculturalnurses.eu Any papers submitted by members of EONS would be welcomed.

allied to the European Transcultural Nurses Associa-

ECC 2013

Professor Mark Johnson was the first to address a packed auditorium on day one of the ECC in Amsterdam. His talk ‘Diversity in cancer care – the importance of transcultural nursing’ was very well received.

JASON HARRIS

tance of transcultural nursing Factors Affecting Use of Services* ●● Ethnic differences in patterns of disease ●● Cultural variations in presentation of symptoms of illness ●● Perceptions of health, body and disease ●● Cultural and language differences in descriptions ●● Accessibility of services (time and place) ●● (Previous experiences of) encounters with services ●● Alternative treatment options ●● Lifestyle, socio-economic status, religion and cultural practices ●● Racism – direct, personal, indirect or institutional ●● Language, education and the availability of information ●● Attitude, awareness and skill of clinical staff (See BMJ Editorial: ‘End of life care in ethnic minorities; providers need to overcome their fear of dealing with people from different backgrounds’ BMJ 338 :489-490 (Johnson MRD: 25 Feb) 2009) *(according to MRDJ)

(Below) This famous poster was used for a UK public awareness campaign in the late 20th century, but today the word ‘AIDS’ could so easily be replaced by ‘Cancer’.

Erik van Muilekom EONS’ new President Erik van Muilekom took over the role at the ECC Congress in Amsterdam in September. In the last issue we introduced him and outlined his background and career path. Here Erik talks about his vision for EONS and what he

What will your approach be as the new President of EONS – revolution or evolution? I believe that EONS’ current direction, its structure and working groups, is right and I want to build on that. This structure makes it possible for more members to have an active role in the working groups or in specific projects. To develop better European participation we have to work on a rotating system of working group members, a little bit similar to the EONS Board. I think the most important thing we have to do now is involve more people; this is a challenge but we must do it. After all, we are the European Oncology Nursing Society and that must mean all of Europe. What special skills do you bring? I am a connector. I have strong links with professionals across the whole area in which we are working. I want to increase involvement with our strategic partners in the oncology field. We can’t make change happen alone – we need to work with others. I will work hard to build these relationships. I already have a lot of experience doing this in the Netherlands and Europe. What is your dream for EONS? I want to see us have a lot of output; making educational tools, having influence through our advocacy groups, promoting nursing research. All we are doing

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will bring to the role of President.

must be visible to our members, using a variety of communication methods – the web, print, and social media. We can learn from the pharma companies in this regard – they use many platforms to communicate. As I mentioned, I want to bring in our European colleagues in the east and the south more. We can do that by having our meetings outside northern Europe and perhaps by reconsidering our policy on translation: we cannot assume that everyone speaks English, even in France and Germany! We must do all we can in this regard so that everyone feels included. All this takes work and we must remember that our Board members are volunteers and already have a lot to do. We must be realistic about what they are able to take on. That is why it is so important to have the wider EONS team. We must have skilled people who are employed to work for the organisation: this costs money of course, but it also generates more income in the longer term as the organisation

becomes stronger as a result. So, there is much to be done but if we work together we can bring about our vision: that all people affected by cancer across Europe will benefit from the care of well-educated, well-informed and highly competent cancer nurses, who will play a central role in providing support, promoting health and improving clinical outcomes. And finally, a little about you as an individual, Erik? I am married to Henk and I live in Leiden, in the Netherlands. Like many Dutch people, I am a keen cyclist. I am very interested in music and I used to sing in a choir. I also like modern art. I work very hard but I also like to relax, especially by going to the sea – and especially to Italy’s Amalfi Coast. I have a large family and many friends and I enjoy a busy social life. I am also multi-lingual: in addition to Dutch and English, I speak Italian, German and some French.

ECC 2013

Prestigious Pezcoller Prize goes to a nurse for the first time The 2013 Pezcoller-ECCO Recognition for Contribution to Oncology has been presented to Anita Margulies for her contribution to the field of oncology for both European nursing and the subsequent impact on patient care. This is an exciting landmark for the oncology nursing community. Anita’s profile is different to previous Pezcoller awardees in that as a nurse she has contributed primarily through educational projects with evidence dissemination and implementation of best practice. Anita’s specialty is clinical oncology nursing and oncology education for nurses and other healthcare professionals. One of her great strengths is her ability to work across disciplines, working with a variety of professional and medical disciplines to smooth the way and get the job done. Anita’s work has influenced care and improved clinical practice.

AN ILLUSTRIOUS CAREER Anita Margulies BSN RN, completed her professional training at Michigan State University and shortly afterwards became head nurse at the University of Michigan

Medical Center in Ann Arbor. She is originally from New York City. However, in 1968 after what was supposed to be a one-year stay in Switzerland, she was, together with Prof. Georg Martz, made responsible for organising the first out-patient oncology nursing unit in Zürich, Switzerland. Her work at the University Hospital in Zürich both in clinical and educational fields, continued until 2010. She is still actively involved in the Swiss Oncology Nursing Society. As a very active and highly valued former member of the EONS Board, Anita is currently working freelance as a consultant and educator and still active in EONS’ Education Working Group where she is co-chair. She lives in Zürich, Switzerland, is married and has two sons. In her Award lecture at the European Cancer Congress 2013 in Amsterdam, Anita said: “Accomplishments in this

increasingly complex specialty are never possible by one person alone. A multidisciplinary team effort is always essential and no team member is less important than the next.” “Science without care, is as ineffective as care without science. The rapid pace of oncology-related developments makes it imperative for nurses to stay current with their profession. Patients need care, patients need education and information, and patients’ wishes and demands are constantly growing.” “Oncology nurses should continue to be a fully accepted and integrated major player in the multidisciplinary team.” Anita Margulies’ publications include journal articles in both nursing and medical journals. She was co-editor of “Onkologische Krankenpflege” Springer Verlag, 5th Ed. 2011 and “Medikamente in der Tumortherapie” Springer Verlag, 4th Ed. 2013.

Some of Anita’s professional projects and areas of contribution during her career to date ●●

The collaborative development of

resource and programme for

EONS’ extravasation guidelines resulting

nurses enhances competence in

in an EONS toolkit. The guidelines were

understanding the principles of targeted

education for nurses in Switzerland from

revised together with ESMO in 2012,

therapies, the delivery of such therapies,

1976 onwards. She has been actively

bringing it to a wider audience and

recognising and managing adverse side

involved in the ESO Masterclass in

published in the Annals of Oncology.

effects, as well as supporting patients

Oncology Nursing since 2011, co-chairing

and their caregivers. Translations in some

the last two years. She will also co-chair

member of the task group, thereafter

European languages have been carried

the 2014 Masterclass, preparations for

as chair of the project. This educational

out. An update in 2014 is planned, which

which are currently underway.

●● Target project 2006 -2013: First as

Anita is co-chairing. ●● Anita led continuing professional

18 18th ECCO - 40th ESMO - 34th ESTRO

European Cancer Congress Reinforcing multidisciplinarity VIENNA, AUSTRIA, 25 - 29 SEPTEMBER 2015

www.ecco-org.eu

In Partnership:

SIOP SIOP Europe

the European Society for Paediatric Oncology

ECC 2013

Inspirational nurse wins Lifetime Award Shelley Dolan, Chief Nurse at the Royal Marsden NHS Foundation Trust, received the EONS Lifetime Achievement Award at the ECC in Amsterdam. Interview by Jim Boumelha

JASON HARRIS

nd what a life! A former EONS Board member, Dr Shelley Dolan is no stranger to receiving prestigious honours, having been awarded the European Society of Intensive Care Medicine Award of Merit for ICU Nursing and an EMBT Nursing Prize for European Haematology Nursing. Her contribution to the development of cancer nursing in numerous countries even landed her the Serbian People’s Medal for Cancer Nursing. However, she remains firmly rooted in her job. “I am first and foremost a nurse” was her first comment after she received the reward. Exuding an infectious passion for oncology nursing, Shelley recalls with pride her early years when she first stumbled across the Royal Marsden, a leading London specialist cancer hospital, “almost by accident as I was doing a shift there.” “My love of nursing was first about critical care,” she reminisces. “As soon as I started working in London, in the third year of my training, I did a placement in intensive care and loved it. I discovered how in intensive care you give a lot of attention to the whole needs of one patient and their family, because you have only one person you are looking after at any one time.”

Shelley Dolan receives her EONS Lifetime Achievement Award 2013

“It is important that nursing is respected for the huge

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diversity and extent of talent,” says Shelley Dolan

Above: Shelley Dolan receives her award from EONS Past President Birgitte Grube (left) and EONS Board Secretary Mary Wells.

Advice: “Take your thoughts seriously; see where the gaps are in practice, and see what patients or families are telling you to try to fill the gaps; work with others on research. You are not alone. With internet technology you can read all the time. Also have fun...”

Working with cancer patients she found particularly rewarding, she says. “I was struck by the way doctors and nurses talked to patients very openly about cancer. I had never really met that before. I was also struck by how young the patients in cancer care were and how involved the patients and their families were in knowing about the disease and how expert patients were about their own disease.” The arduous effort it took to finish her PhD, at the University of Wales, she recalls with less enthusiasm, though she says the experience made her conquer her indiscipline and understand better the self-control and organisation necessary to work and study at the same time. She could not have done it, she says, without formidable support from supervisors such as Professor Jessica Corner. This is why initiatives like the Health Service Research programme run at the Royal Marsden are so valuable, says Shelley, who adds that the programme leader, Dr Theresa Wiseman, has played a key role in ensuring that nurses and junior doctors do their MScs and then their PhDs. For more than two decades, Shelley has inspired countless nurses to strive for better care of people with cancer and their families. She has devoted years of her life to spotting new talent and

encouraging young nurses and junior doctors to think about cancer as a specialty. Shelley has often been described as an inspiring and transformational nurse leader, who is redefining the legacy of Robert Tiffany – a pioneer of specialist cancer nursing who was also based at the Marsden. However, she has learned to lead from the back. “You have to prove your credibility and earn respect,” she says. “It is important that nursing is respected for the huge diversity and extent of talent.” And when given half a chance, as she was at the Royal Marsden, she goes for it. Shelley helped open the largest Critical Care Unit for cancer patients in the UK when she was a Nurse Consultant in Critical Care, and set up the London Post-Doctoral Cancer Research Forum with Professor Alison Richardson. She is now playing a key part in transforming cancer services in London and the wider UK, in her role as associate clinical director at the London Cancer Alliance – a new organisation launched in 2011, whose main aim is to ensure that hospitals work together across London to improve outcomes by raising the quality of care. It is at huge gatherings like the Amsterdam European Cancer Congress that Shelley feels in her element. “It is so impressive to see these people from all over Europe, a massive wealth of talent, passion and commitment to each other that dates back years and years,” she enthuses. “They may be different culturally, coming from so many countries with distinct traditions of nursing, but a setting like this congress shows what doctors and nurses working alongside each other have achieved across Europe.” To all of them she offers the following advice: “Take your thoughts seriously; see where the gaps are in practice, and see what patients or families are telling you to try to fill the gaps; work with others on research. You are not alone. With internet technology you can read research all the time. Also have fun, because the nursing community is great fun.” Shelley was honoured by EONS for her unstinting contribution to cancer nursing that spans three decades. In her acceptance speech she paid tribute to the support of her friends and family, which made it possible for her to put so much into her work while also bringing up two lovely children. “I have so much fun coming home after a busy day and hugging my five-year-old,” she says. “Having the energy to do what we do everyday in our professional life is hugely important and family life has been my everlasting source of strength.”

ECC 2013

Xerostomia – an ‘orphan’ waiting for adoption Described as one of the most common, persistent and distressing symptoms in palliative care, xerostomia ranks fourth following pain, dyspnoea, and terminal respiratory congestion. At the Amsterdam cancer congress, EONS’ new board member Andreas Charalambous made a comprehensive presentation of the symptom, ranging from a thorough review of its research to its management. Many academics would struggle to explain why they choose to research subjects other people do not touch. Andreas has no such qualms. On the contrary, he speaks with passion and great authority about something he believes should be given better attention – xerostomia, a condition characterised mostly by a dry mouth. “People should stop treating it as an orphan symptom and adequate resources have to be allocated to that effort,” he says. Like so many orphan symptoms, xerostomia is not perceived as life-threatening to the patient; but it is a life-changer. Its underlying pathophysiology includes the invasion of salivary glands by cancer, diminution of salivary secretion and the erosion of buccal mucosa. Patients often suffer anxiety and depression as a result. “There is a profound misunderstanding of the effect of xerostomia on cancer patients,” explains Andreas. “It is not just a physical symptom, it also affects the patient’s social and psychological way of living. Saliva is something people take for granted. If you don’t have saliva in your mouth then there are many problems piling up. For a start, you cannot chew or swallow your food properly, and that forces you to drink more water or other liquid. Furthermore, you won’t be able to speak properly, as there are words that you cannot pronounce. As a result people are embarrassed, in particular those in the public eye, and cannot engage. If you

Andreas Charalambous

Xerostomia is not just a physical symptom, it also affects the patient’s social and psychological way of living

lose your speech, it is like amputating one of your legs.” Andreas started as a general nurse, then took up postgraduate education in oncology nursing. Today he is an assistant professor at Cyprus University of Technology, where he was elected to the post of oncology and palliative care to teach a 13-week palliative module and 13-week oncology module at undergraduate level.

As well as being an academic, Andreas is also an active researcher, working with institutions beyond Cyprus focussing especially on supportive care. In his lecture, he referred to his work involving patients with head and neck cancer, in particular those with thyroid cancer, who will undergo radio-iodine therapy. “We are using thymus honey as a preventive in order to mitigate the effect of radiation on the salivary glands. The results are measured through quantitative scintigraphy, clinical assessment as well as self-administered questionnaires,” he explains. Recent research has increased the effectiveness of interventions in the management of xerostomia with saliva substitute spray, integrated mouth-care systems and oral reservoir devices, and even traditional acupuncture, and is showing promising results. Andreas argues for a more holistic approach and interdisciplinary specialised care for patients. Andreas is proud of his efforts to teach his students by example. “We have introduced in the radiology department a self-assessment of xerostomia which, we hope, will provide an opportunity for radiation nurses to assess xerostomia and not take it for granted. My message is that this should not be something that we take lightly, it should be acknowledged fully within the multidisciplinary team,” he says. Andreas plans to publish his research in the European Journal of Oncology Nursing.

Views from the ranks: veteran and freshers FAREWELL TO ECC Having clocked up 30 years of oncology conferences, Paofi Tjia finally said her goodbyes to her last one, the European Cancer Congress 2013, in her hometown of Amsterdam. Paofi started as a nurse in 1977. Her enthusiasm for international conferences was sparked by a laudable initiative by her hospital to send her to an international nursing conference in the belief that not only nurses experienced in leadership roles but also nurses from the bedside should participate. She caught the bug and there was no turning back. She took the train to Lausanne for the founding ECCO conference, in 1981, and has since participated in all of them, which has taken her to cities across Europe, including Stockholm, Barcelona, Madrid, Berlin, and even Jerusalem. “At the first one, the numbers were much smaller, around 1000, and now they are 18,000. It reflects the development of oncology as a discipline,” she says. Over the years, Paofi has seen many changes in cancer nursing, ranging from the growth of nurses’ interest in research to the impact of social media. “In the ’80s, nursing

Paofi Tjia

Interviews by Jim Boumelha

and research were two worlds apart, but today nurses want to know the rationale for what they are doing. The advent of social media is making access so much easier. You receive so much material from organisations before an international conference takes place that you can make your own agenda before even getting there.” Paofi has, however, decided to throw in the towel. “Now that I am going to retire from my full-time job, I think this is my last ECC congress,” she said.

“WE ARE ONLY A SMALL PART” Danny Quaduliey and Elles Lutke-Schipholt, specialist cancer nurses and members of the Dutch V&VN nursing association, were both ECC novices, attending for the first time, although they had been to other oncology conferences. Having heard so much from colleagues about ECC, they had decided to sacrifice

their weekend and immerse themselves in this huge crowd puller. “I wanted so much to see it but, in my wildest dreams, I could not have anticipated so many people coming from all over Europe and beyond,” said Danny. “There are so many things to choose from that it is mind-blowing.” Elles welcomed the multidisciplinary nature of ECC but would have liked it to be a little more geared to the needs of cancer nurses. She found some of the multi-profes sional presentations rather too medical and perhaps too advanced, and was not sure how she’d use this knowledge in her job. She felt the pharma stands were also aimed more at doctors, “Nurses are a very small part,” she said when asked about them. Both Ella and Paofi would also have preferred the sessions for nurses to have been right at the centre of the action. Perhaps nurses will one day manage to convince the doctors of this need. However, both really enjoyed meeting colleagues at ECC. Will they come back? “Perhaps not Danny if it’s in another country, but if Quaduliey it is on offer, we’ll be there.”

Views from Siberia

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Two nurses from Severodvinsk City Hospital #2 in Arkhangelsk Oblast, Siberia, were newcomers to European conferences. For Diana Malkiova and Irina Ulianova it was a lifetime opportunity to learn more and exchange experiences with colleagues about helping cancer patients and their relatives. The Russian Nurse Association was founded at their hospital in 1993 and has since

acquired a solid reputation. But it was only in July this year that the oncology branch was launched. Their hope is that, as the young organisation grows and consolidates, it will start to impact positively on cancer care in Russia. “It was such an inspiration to hear first hand the best specialists in the field of oncology and learn about the many new techniques and approaches to cancer treatment,” said Irina, “The seeds sown at the Congress will bear fruit in our professional activity.”

ECC 2013

EuroPEPs – Putting evidence into practice A resource has arrived which will give nurses the tools to try to change the practice that already exists in their clinic or to initiate the first use of a guideline: the EONS EuroPEPs. Project chair, Anita Margulies, explains: WHY ARE THE EuroPEPs SO IMPORTANT? Improving symptom management in cancer nursing practice within Europe requires both implementation of what is already known as well as the skills to make change happen. Making sure that evidence is utilised is a difficult task: there is a lag between research and clinical practice. This is the result of a gap between the available evidence and what is actually implemented. This knowledge gap impacts on patients as poor or inappropriate care. Results from research studies reveal that nurses as well as other healthcare professionals put evidence into practice insufficiently. There are multiple reasons why the latest evidence is not used. Research is often difficult to understand for practitioners, overwhelming due to the amount published, and often nurses feel they don’t have the expertise or power to make such changes in clinical practice. If we could put even a fraction of what we know about symptom management into practice we would improve the patient experience. Each EuroPEP consists of: ●● explanation of how to use the guide ●● expert opinion for Europe ●● quick view ●● assessment tools ●● definitions ●● references ●● evidence tables. How did the EuroPEPs come about? When the European Commission launched the European Partnership Action Against

Cancer (EPAAC) in 2011, a Joint Action to improve the prevention, detection, care and treatment of cancer throughout Europe, EONS committed to it through the delivery of EuroPEPs that would enhance symptom management guideline implementation in clinical practice. EONS developed this project in collaboration with the USA Oncology Nursing Society (ONS), who developed these tools for use in the USA. No European guidelines were available for four of the five symptoms selected for delivery: Dyspnea; Radiodermatitis (Radiation Skin Reaction); Lymphoedema and Peripheral Neuropathy. Pain, the fifth topic, although well documented, is still behind in implementation in many European countries and so was also included. The EONS/EPAAC team, lead by EPAAC Chair Prof Sara Faithfull and PEPs Chair and former EONS Board member Anita Margulies, is implementing the EuroPEPs project in two phases.

EXPERT REVIEW The five PEPs were reviewed in 2012 through a rigorous process by leading experts and practitioners in the field. Associated with this is the Evidence Synthesis, a guidance document that itemises existing evidence for symptom management and giving clear guidance of what

should or should not be implemented in practice. Funding for the project was shared between EONS and the European Commission. From the English original, translations were made into five European languages (German, Dutch, French, Slovenian, Croatian) which allows use in ten countries. Two workshops to guide nurses and their managers in the use of these documents and how to implement them in practice were also delivered. Launching the first series of EuroPEPs, Chair of the project, Anita Margulies, said: “EONS is confident that this information, coupled with efforts and commitment to improve practice, will help achieve better, patient-centred outcomes based on the best-available scientific evidence. The EuroPEPs will be available to all EONS members when the pilot programme is finalised. This will be made public on EONS’ website in 2014. We hope for further collaboration with the ONS to continue making such information available to all European nurses.”

Burkhard Lebert

My Congress Nurses from around Europe describe their ECC experience

Rosario Caruso (European Institute of Oncology, Milan, Italy) appreciated the opportunity to share experiences, be inspired and network. Rosario presented a poster on nutrition issues in oncology nursing practice.

(University Hospital Heidelberg, Germany) was looking for the latest information about oncology nursing research but was also interested in the methodology of organising conferences like this. He was quite pleased with the oncology nursing sessions though felt the level was not always consistent. He also appreciated the many networking opportunities.

“I enjoy the networking most and seeing what’s new, particularly in the area of survivorship and rehabilitation. I always take suggestions home and integrate them into the education courses I develop.” Karina Wittrup (University College, Copenhagen, Denmark) works in nurse education.

Irena Laska and Dionis Jorgji (Korce Family Healthcare Institute, Albania) enjoyed networking. Irena was keen to have the latest information on nursing research, patient survival issues and psychology. Dionis was looking for information on palliative care in oncology and physiotherapy for cancer patients in palliative care.

Sabine Vandenbosch, a Belgian oncology nurse working in Switzerland, used the ECC event as an opportunity to be updated on breast cancer care-related topics.

Kenan Oren (right) and Nihal Orlu (American Hospital, Istanbul, Turkey), Kenan was mainly interested in technology in healthcare. Nihal was particulary interested in the palliative care sessions.

ECC 2013

“This was my first ECC. I truly

Marijke Quaghebeur,

liked the panel discussion on the

( University Hospital, Ghent, Belgium) presented a talk related to communication with adolescents and young adults with cancer and their care-giving parents. She particularly liked the EONS General Meeting and the networking reception.

advocacy and ethics topic, ‘Quality of life/Palliative care – Do patients perceive quality of life the same way their doctors do?’ Also, I very much liked to visit the EONS Lounge and meet others or just

Silvija Piskorjanac, (University Hospital, Osijek, Croatia). “I’m the only Croatian here but happily I know some colleagues from previous experiences. I feel honoured to speak here and I hope to learn new things, make some new friends and do some professional networking. I will share my experiences with other colleagues when I get home and am taking lots of pictures to show them.”

relax in a welcoming environment.” Iveta Nohavova, Czech Republic,

Rob Kuin (Netherlands Cancer Institute) “I have come both to speak and for the inspiration I find at such events. I love hearing what others are doing, particularly in research. It is my ambition to be an advanced nurse within the next four to five years.”

“This kind of event motivates us to improve our expertise and to communicate and collaborate with different people. We were very proud of exhibiting the only French nurse poster. We are aware that French nurses have to improve their English to access to international events: we hope we’ll convey that message.”

Katarina Lokar, (Institute of Oncology, Ljubljana, Slovenia) “As a nursing director from the only cancer centre in our country it is necessary to know where things are going and to introduce new things into our practice and spread knowledge to other nurses through education. Without this kind of conference we cannot move our practice from today to tomorrow. We don’t have another source of information like this – it is unique. We need to know where we are on this knowledge and practice map – are we behind, at the same level or better? When you come here you find you are normal – everyone is experiencing some problems, and some successes.”

Amel M’Sadek and Marielle Duval (Oncology Center, Rennes, France) 15

EONS Board members Mary Wells, Francoise Charnay-Sonnek and Sultan Kav judge the posters.

Writing on the wall By Mary Wells Professor of Cancer Nursing Research & Practice at NMAHP Research Unit, University of Stirling.

rt and science are both equally important for poster presentation. A well-designed and visually attractive poster is likely to encourage conference delegates to stop and look. The use of colour, images and photographs can provide welcome relief from the sheer volume of information that delegates are exposed to in the many scientific symposia, proffered paper sessions and debates. But appearance isnâ&#x20AC;&#x2122;t the only thing that matters. The science behind a good poster must be rigorous and the communication of a clear and important message is crucial.

DIVERSE THEMES AND PRESENTATION This year, many of the nursing posters were of a very high standard. Submitted under the themes of Advanced Nursing Roles; Impact of Cancer on Patients and Families; Supportive and Palliative Care;

New Developments; Survivorship and Rehabilitation; Symptom Management; the posters covered issues as diverse as experience based co-design, the use of frozen gloves to prevent nail changes in patients receiving docetaxel and the changing experience of coping with nodal relapse in melanoma. The presentation of the posters was equally diverse, making judging quite a challenge. I was particularly impressed by the posters describing rehabilitation initiatives, illustrating the fantastic work that is going on around Europe to promote health and wellbeing after treatment is over. There were a number of posters that especially caught my attention: a beautifully illustrated pilot study of an art therapy programme from Switzerland, an innovative public involvement programme for research in London, and a poster describing the initiation of a project which will include patient reported outcomes as part of a routine national dataset in Sweden. There were

ECC 2013

Rehabilitation nursing to patients during treatment for colorectal cancer How to endure life during treatment for colorectal cancer – Birgitte Pedersen, B. Winther, T. Bladt, B.K. Hansen, A. Norlyk Birgitte Pedersen talks about the project that informed the winning poster at ECC:

posters from clinical teams, educationalists, researchers and charities. European cancer nurses are clearly engaged in an impressive range of practice innovations and research projects, which influence the care of people with cancer, locally and nationally. It was particularly encouraging to see posters from countries that are usually under-represented at European congresses.

Our project at the Department of Oncology, Vejle Hospital, in Denmark, focuses on rehabilitation nursing care for rectal cancer patients. This group of patients was chosen partly due to their vulnerability in the sense of shortand long-term side effects and partly because of the taboo involved in having rectal cancer. Also, there was a need for improvement of rehabilitation care for these patients. In Denmark rectal cancer ranks fifth in frequency of malignant diseases and ninth in women, with around 1,400 new cases each year. The treatment may include surgery, chemotherapy and radiotherapy depending on the disease pattern of the individual patient. This project involved an interview clarifying the experiences of patients in their everyday lives during and after the course of treatment. The purpose was to identify the patients’ perception of the challenges in this respect.

AND THE WINNER IS…

Method

We shortlisted 8-10 posters and deliberated for some time, eventually deciding on the following winner of the best poster at ECCO 17: How to endure life during treatment for colorectal cancer Birgitte Pedersen, B. Winther, T. Bladt, B.K. Hansen, A. Norlyk, from Denmark. Birgitte will receive free registration at EONS 9. In second place, we chose a poster from Rennes (France) entitled, Clinical nurse specialist: a key link to manage patients using targeted therapies – experience of Centre Eugene Marquis by A. M’Sadek, M. Duval, J. Edeline, C. Lefeuvre, T. Lesimple, E. Vauléon, S. Sizun, B. Laguerre, E. Boucher. In third place was The importance of combination therapy in patients with lymphoedema – L Buzea and C Ancuta, from Romania.

Qualitative design inspired by hermeneutics/phenomenology. Ten qualitative, semi-structured interviews were conducted, i.e. six men and four women were all interviewed at different times during and after their course of treatment. The analysis was inspired by Kvale & Brinkmann’s sense of interpretation and resulted in four themes: ●● Coping with the changed body ●● Reorganizing everyday life

●● Accepting help from family and friends ●● Seeing life from a different perspective

The results of this project will form the basis of a “Rehabilitation program for rectal cancer patients” offering patients and relatives conversations and training based on their own challenges. We wish to offer them support to make their lives worth living during and after treatment for rectal cancer. The main purpose of this project was to focus on the patient perspective, since the current literature shows cancer treatment has a major influence on the everyday lives of patients as well as their close relations. The stories of these patients show that a cancer diagnosis changes a person’s life and existential questions arise. This is important knowledge for nurses in the daily clinic. We were very happy and proud that our poster won a prize and we really appreciate the recognition from professional colleagues. It confirms the relevance of the issue and the impor tance of continued work on the subject.

Birgitte Thisgaard Pedersen

Cancer diagnosis in young people â&#x20AC;&#x201C; what do we know now? Young people with cancer face unique challenges from complex patient pathways, diverse places of care and prolonged period until diagnosis. More needs to be done to help GPs identify cancer symptoms in young people and refer them to cancer specialists.

Report by: Lorna Fern

In Europe, five-year survival for young people with cancer is on average around 80-85 per cent. Depending on the cancer type, this can vary from 46 to 92 per cent, and for some cancers, there has been little improvement in survival over the past two decades.1 Cancer in young people is rare, accounting for less than one per cent of all new cancer diagnoses annually. However, cumulatively across Europe there are approximately 20,000 new cases each year in young people aged 15-24 years.1 Young people present with a spectrum of malignant diseases, which include lymphomas, leukaemias, brain and germ cell tumours, sarcomas, melanomas and other solid cancers.1 Despite overall impressive five-year survival rates, cancer is the leading cause of disease death in most developed countries. Needs of young people There has been increasing international recognition of the unique needs of young people with cancer over the past decade. Why should this be? For some cancers, notably bone sarcomas and acute lymph-

oblastic leukaemia, survival and improvements in survival of teenagers and young adults has been less than that observed in children.1 There are a number of reasons which may explain survival differences between young people, children and some adult cancers. These include, but are not limited to, less involvement in clinical trials,2 poorer understanding of cancer biology (not only in terms of the cancer but also host biology and the consequences of cancer growth in a pubertal environment), and diverse place of care â&#x20AC;&#x201C; young people can fall between adult and paediatric services, neither of which are suitability equipped to deal with the range of issues which accompanies a cancer diagnosis during a period of enormous physiological and psychological change. In addition to these factors, a prolonged period to cancer diagnosis is often described by young people. However, which outcomes this may affect is not fully understood. For some cancers, a prolonged period to diagnosis has been associated with reduced survival; however, this is not universal across cancer types, suggesting other factors such as cancer/host biology

BRIGHTLIGHT Team and the YAPPERS talk about access to different types of research for young people www.brightlightstudy.com

ECC 2013

â&#x20AC;&#x153;There has been increasing international recognition of the unique needs of young people with cancer over the past decadeâ&#x20AC;?

may also be important determinants of the time to diagnosis.3 Consequently, why prolonged diagnosis happens, what outcomes in addition to survival are affected and how the timeliness and patient experience of a cancer diagnosis for young people can be improved is unknown. Cancer diagnosis One does not have to look very far to find some evidence of dissatisfaction with the cancer diagnosis experience for young people. Young people have been telling us for some time now that they feel their cancer diagnosis could have been quicker.4 Early diagnosis is frequently cited as a priority area of research for young people and often the topic of patient advocacy and education.5 This has been accompanied by a growing body of literature suggesting that young people experience a prolonged diagnostic journey compared to children and older adults.3 However, the disparate ages and diagnostic groups included in mainly small retrospective studies make meaningful interpretation and comparisons difficult. Indeed, early diagnosis literature in adult studies is also often confusing and complicated by a lack of theoretical framework and consistency in terminology used to describe the time to cancer diagnosis.6-8 In light of this, the recently published Aarhus statement offers a set of guidelines for the conduct of research in cancer diagnosis.7 The Anderson model of total delay was also recently revised, recognising that the pathway to cancer diagnosis is often not linear and provides theoretical perspectives on the decisions taken by patients to seek help. This model of pathways to treatment is shown in

used to generate risk assessments for some cancers.15 However, while retrospective analysis of pre-diagnostic consultations in young people describes a positive association between alert symptoms and a cancer diagnosis, the positive predictive value of symptoms is low even when specified symptoms are combined with multiple consultations in a short time period. What does this mean for GPs? It means that due to the rarity of cancer in this group, it is likely they will only see one such cancer diagnosis in their career. It means that a young person consulting four times or more in a three-month period has a significantly increased risk of cancer, but for every 10,000 young people who fit this description, only two will turn out to have cancer. For young people presenting with a lump/mass of the head and neck, out of every 10,000 cases, 50 go on to be diagnosed with lymphoma.13 So while these symptoms do have some utility in identifying young people with a potential cancer, the low predictive value is disappointing and more research is needed in order to from the basis of the sort of risk assessment tools that are used in adult cancers.15 More research is needed to help GPs identify and

Dr Fern explaining the BRIGHTLIGHT study to the YAPPERS. The study will examine the value of specialist cancer care for young people in England

Figure 1 and illustrates time points and events where time may be lost.8 It is easy to see in this model why young people’s experiences may be complicated and prolonged. For example, symptom appraisal, the first part of the journey, is accompanied by and often mistaken for normal or pubertal growth. Studies reveal around a quarter of young people cannot recall any cancer symptoms (26.2%) and confusion about cancer symptoms are apparent, for example hair loss is reported by some to be an indicative symptom.9 Young people are unaware of the commoner teenager and young adult (TYA) cancers. If symptoms are appraised as serious, barriers to seeking help might include worry about what the doctor might find (71.8%), embarrassment (56%) or being ‘too scared’ (55.6%).9 This, coupled with inexperience of communicating serious symptoms, may further impede the diagnostic process for young people.

GP CONSULTATIONS Most patients, including young people, will visit their General Practitioner (GP) about their symptom(s). The number of consultations prior to referral to a cancer specialist is associated with primary care interval and timeliness of referral.10 Recent data from the Cancer Experience survey in the UK has shown that young people are twice as likely to have three or more GP pre-referral consultations compared to older adults.11 Interpretation of presenting symptoms is challenging both for young people and healthcare

professionals. Symptoms may be misinterpreted as infection, normal or pubertal growth and life transition factors, such as exam stress and sporting/accidental injuries. Knowing how young people use primary care, how often potential ‘alert’ symptoms occur and the predictive value of alert symptoms, and how often a cancer occurs in a young person with an alert symptom, could be used to help GPs identify potential cancer symptoms in young people and refer on to a cancer specialist.12-14 In adults, this methodology has been successfully

Fig. 1. Pathways to treatment Walter, F., et al., The Andersen Model of Total Patient Delay: a systematic review of its application in cancer diagnosis. J Health Serv Res Policy, 2012. 17(2): p. 110-8.

Events

Detection of bodily changes(s)

Perceives reason to discuss sympton with HCP

First consultation with HCP

Diagnosis

Start of treatment

Processes

Patient appraisal and selfmanagement

Decision to consult HCP and arrange appointment

HCP appraisal, investigations, referrals and appointments

Planning and scheduling of treatment

Intervals

Appraisals

Help-seaking

Diagnosis

Pre-trreatment

PATIENT FACTORS (e.g. demographic, co-morbidities, psychological, social, cultural, previous, experience) Contributing factors

HEALTHCARE PROVIDER AND SYSTEM FACTORS (e.g. access, healthcare policy and delivery) DISEASE FACTORS (e.g. site, size growth rate)

ECC 2013

refer appropriately young people with a suspected cancer without overwhelming diagnostic services and causing unnecessary patient distress. The route to diagnosis for young people in England suggests a higher proportion of emergency presentation.16 Indeed, the results of this year’s patient conference ‘Find Your Sense of Tumour’ certainly support this, with one third of those attending being diagnosed through emergency presentation.17 However, the poor outcome associated with emergency presentation in adults may not manifest in children, teenagers and young adults (CTYA), and the relationship between Accident & Emergency admission and previous primary care use for CTYA is poorly understood. Timely cancer diagnosis in young people may or may not affect survival, but treatment-related morbidity and psychological distress associated with a ‘bad diagnostic experience’ may be reduced. For this group, factors other than timeliness are likely to be important, such as communication, delivery of diagnosis and age-appropriateness of diagnostic services. More research is required to allow us to identify the best ways to empower young people to be confident at appraising bodily changes and present and negotiate their way around complex healthcare systems in a timely manner. We also need to know more about how to educate healthcare professionals about cancer in young people to facilitate rapid referral to diagnostic facilities and the start of treatment in age-appropriate settings. This, in turn, will improve outcomes for this group.

Young people require specialist nursing care By Sam Smith, Head of Nursing and Quality (North), Teenage Cancer Trust Historically, teenagers and young adults (TYA) have been treated with younger children or much older adults. In the UK, specialist TYA age-specific units in cancer care have developed over the past 23 years, resulting in TYA cancer care becoming recognised as a distinct speciality. Many young people are now cared for in purpose-built environments and treated by expert teams. Teenage Cancer Trust is a UK charity recognised for being the catalyst and driver in the development of age-appropriate cancer services. The charity opened its first specialist unit in London in 1990 and has since opened 27 further units across the UK. Centralisation of care within these units has enabled the organic growth of clinical expertise over many years, through experience and a multidisciplinary approach. The UK’s experience in delivering age-appropriate, multidisciplinary and nursing care has recently featured in a ‘Blueprint of Care’,1 which gives practical guidance to professionals planning and providing services for young people with cancer and assists those who are in the early stages of developing care for this age group. Teenage and young adult cancer nursing The best standard of nursing care for TYA patients is undoubtedly provided by those who have been specifically trained or have significant expertise in managing this particular patient group. The Teenage Cancer Trust believes that investment in nursing is essential to ensure patients have access to the best quality of care, and the best possible environment and support. The charity funds a growing number of specialist nurses as well as national educational and training programmes for professionals. TYA cancer care is rapidly evolving internationally and it is crucial that care is delivered by an appropriately trained workforce with appropriate nursing skills. TYA expert cancer nurses have evolved over time and range from clinical nurse specialists, to lead nurses and nurse consultants. These nurses have led developments in TYA cancer care in the UK and internationally. Currently the knowledge, skills, competences and education requirements for nurses working in this specialty are being defined, from foundation level to expert and advanced practice, through a project and publication supported by the Royal College of Nursing, Teenage Cancer Trust and the Florence Nightingale Foundation. This will enable TYA specialist nursing care in the future to be delivered by a competent and knowledgeable nursing workforce who will embed the philosophy and principles of age-appropriate care for TYA’s with cancer. This is an exciting time for TYA cancer care as a distinct specialty and provides an ideal opportunity for sharing best practice and international collaboration, to ensure the unique needs of this vulnerable patient group are met.

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

Teenage Cancer Trust Nurses

eons_newsletter.html Based on an oral presentation by Lorna Fern at the 30th ECC, Amsterdam, 2013

Nurses’ role in robotic surgery Danuta Lichosik, of the European Institute of Oncology, Milan, Italy, addressed the ECC on this fascinating subject. The Institute runs training courses in robotic surgery, and here Danuta answers some key questions about her experience of this relatively new technology and what it means for cancer nurses.

Danuta Lichosik, with Chiara Arnaboldi, Davide Astolfi, Rosario Caruso, Massimiliano Granata.

What is robotic surgery and how is it developing? Throughout the history of nursing, the discoveries and knowledge of one time have served as a platform for the innovations of the next. That is especially true for minimally invasive surgery (MIS), where perioperative practitioners have been challenged to learn and stay abreast of technology in a constantly changing landscape of new techniques, and improved instruments and equipment. The “laparoscopic revolution” of the 1980s propelled and encouraged the changes towards less invasive approaches and new techniques, such as modern robotic-assisted surgery. The da Vinci Surgical System is used in several surgical specialties including urology, gynaecology, cardiac, general surgery, head and neck and thoracic surgery. Minimally invasive robotic surgery brings important benefits for patients, such as less blood loss, reduced risk of blood transfusion and a shorter overall recovery time. How did you, as a nurse, become interested in robotic surgery My personal experience in surgery started immediately after basic study in the Medical School of Nursing in Warsaw. Following that, I graduated as a specialist ICU nurse working in the operating theatre in the Post Graduate Medical Center. National and international professional activity has allowed me to improve and update my knowledge and practice. From 1994, I have been employed at the European Institute of Oncology in Milan, Italy, where robotic-assisted surgery was introduced in the operating theatre in 2006. I have been involved in this clinical activity as

a team member and as Coordinator Nurse at the School of Robotic Surgery which was founded in the Education Department of the European Institute of Oncology, Milan. We believe that team training involves all members of the robotic surgical team – surgeons and nurses learning together – and is the main key to ensuring patient advocacy and safe care.

Above: The multidisciplinary team works together in the operating theatre to perform robotic-assisted surgery – European Institute of Oncology, Milan, Italy

ECC 2013

What is the role of the nurse in robotic surgery – what are the challenges and opportunities? The role of the robotics nurse specialist is both challenging and exciting because the technology is new and the role is open to interpretation and definition – and, because of this, needs a flexible job description. Daily practice shows us the need for continuous education, especially regarding e-nursing skills, creation and revision of guidelines and specific protocols. Science and technology are advancing at an incredible pace and a critical analysis of these new developments is the responsibility of the perioperative nurse. Nurses, as members of the robotic surgical team, must demonstrate a very good level of professional knowledge, and be an expert in robotic technology. This is demonstrated by playing a key role in data collection, analysing trends and outcomes, and identifying safety issues. The operating theatre nursing staff has an important responsibility to work following best-practice rules. To analyse periodically their roles and skills is an effective instrument to improve everyday practice. The creation and application of guidelines and specific protocols give positive results in daily practice and maintain standards of care. What are the implications for working as a multidisciplinary team? Robotic technology has increased the need for staff in the operating room. The nurse coordinator, scrub nurse and circulators involved in a robotics programme become as specialised as the doctors doing the actual surgery. When one surgery ends, nurses and surgical technicians are responsible for completing the medical charts,

Above: Diagram showing how the multi-disciplinary team works together in the operating theatre to perform robotic-

undocking the robot and doing an inventory of the robotic instruments, then the clean-up and set-up for the next case. Everything happens at once and it’s labour intensive. Operating room staff strive to improve efficiency while maintaining the highest quality to benefit the patient, surgeons and the hospital. This creates much more of a team, with an equal approach within the operating room – which I have found to be not only much more efficient, but much friendlier, fun and, most of all, beneficial to the patient. There is no question that without the expertise of a good robotic nursing coordinator, scrub nurse circulators and technicians, the robotic surgery programme would not be where it is now. The team approach has helped robotics to be recognised.

assisted surgery.

Below: The da Vinci Skills Simulator.

What does robotic surgery mean for nurse training? The training pathway incorporates product training, clinical training, and clinical education for integrated teams of both surgeons and operating theatre staff. The primary purpose of our training programmes are to develop and increase a surgical team’s confidence and competence in the use of da Vinci surgical system. The ultimate goal is to develop a self-sufficient team fully capable of performing surgical procedures with minimal product support and instruction. The training programmes are designed for surgeons, first assistants, nurses, da Vinci coordinators, residents and fellows. The da Vinci Skills Simulator contains a variety of exercises and scenarios specifically designed to give users the opportunity to improve their proficiency with the console controls. Simulation is an important part of the learning experience for robotic surgical technology. The exercises range from basic to advanced and are designed to be relevant to surgeons and nurses from any surgical specialty, each

“We hope that operating theatre nurses will have the opportunity to

the operating room. Nurses observe this to anticipate the needs of the surgeon. The reason why many nurses choose to work in the operating theatre is because they love anatomy, physiology and technology. The exciting aspects of robotic-assisted surgery is new technology in continuous evolution, the team work and the multidisciplinary surgical practice, especially in the surgical oncology field. Until recently, it was unknown how robotic surgery would develop and evolve. Robotics does not replace human intelligence, skill and experience but there is confidence that it is the surgery of the future. We hope that operating theatre nurses will have the opportunity to be closer to the patient and to express themselves using the technology in the support of patient care.

be closer to the patient and to express themselves using the technology in the support of patient care.” exercise covers skill categories such as system settings, needle control and driving, energy and dissection. What does the future look like for nurses’ role in robotic surgery - again, what are the challenges and the opportunities? As more surgeons perform robotic surgery and more patients experience it, operating room nurses see their roles changing as well. A nurse colleague of mine qualified since 1986, says her role traditionally has been a patient advocate offering emotional support, being part of the patient safety team and providing clinical care. Now, technological oversight is a large part of the picture. Before the patient arrives in the theatre, nurses make sure the large robotic equipment is set up correctly in the operating room. The patient has to be positioned a certain way depending on what surgery will be performed. Accurate patient positioning, careful padding of all pressure points, and appropriate application of anti-skid materials therefore are paramount for preventing neuromuscular injuries. Surgeons use different tools attached to the robot’s arms depending on the type of surgery: nurses have to make sure the proper tools are ready to go. Because of the technology, nurses must think of different ways of doing things, to provide the best patient care. During the procedure, the action taking place in the patient’s body is displayed on a high-definition monitor in

Below: Nurses training in robotic assisted surgery learn how to position the patient correctly to ensure pressue points are padded and

Details of the references cited in this article can be accessed at

anti-skid materials

www.cancernurse.eu/communications/eons_newsletter.html

in place to

Based on an oral presentation by Danuta Lichosik at the 30th

avoid neuro-

European Cancer Congress, Amsterdam, 2013.

muscular injuries.

ECC 2013

Together we are better Improving cancer care through shared working Janice P. Richmond and Terry Hanan

A new model of cancer care, designed in Ireland to care for patients in their own environment after they are

ne in three people in Ireland will develop cancer during their lifetime, and over 29,000 new cases of cancer are diagnosed each year.1 Due to an ageing population and improved screening/detection of cancer, the incidence is expected to rise exponentially to over 40,000 per year by 20201, with an estimated 100% increase in cancer incidence over the next 20 years.2 Many, if not all, of these people will require nursing care during their cancer experience. The increasing number of individuals with cancer receiving potentially life-threatening treatments causes a considerable challenge for acute hospital services. Most individuals receiving treatment for cancer attend a medical oncology unit for therapies and are then discharged home; as a result, most sideeffects are experienced within the community setting. This model of cancer care has the aim of retaining the patient in their own environment, yet oncology health professionals are cognisant of the requirement to provide continuous, safe, efficient cancer care.

discharged home, has been hailed as safe, seamless and efficient. It shows that sharing care with the community nursing service can positively affect the patientâ&#x20AC;&#x2122;s quality of life and improve hospital capacity. Developing a training programme The National Cancer Strategy (2006) for Ireland recognised the need for improved integration between specialist and primary healthcare services. In 2010, the National Cancer Control Programme developed the Community Oncology Nursing Programme. Its aim was to build capacity, confidence and competence in community professionals to provide integrated seamless care throughout the patient journey. The programme was piloted in County Donegal (North West of Ireland) involving oncology staff in a district general hospital and community nurses. It was delivered over six months and was theoretical and skill-based. It was approved by the Irish Nursing Board (An Bord Altranais).

Pictured above: Graduation day 2011 from the Community Oncology Nursing Programme, showing community nurse participants and local and national staff critical to its success. Authors Janice Richmond, front row extreme left, and Terry Hanan, back row third from left.

National and local governance structures and processes were established through an implementation group. Ethical approval was sought and obtained from the local hospital ethics committee. Project design, implementation, data collection, analysis and evaluation involved collaboration with relevant nursing, medical and management representatives from community, hospital and nurse education centres. A key safety feature built into the programme included assessment of community nurses’ knowledge, skills and competence upon completion of training. A designated referral form and a Community Oncology Nursing Resource Book3 were developed to support the community nurses’ extended roles. A robust evaluation of this educational initiative was performed by the National Cancer Control Programme.4 The evaluation involved patient interviews, focus groups with community and hospital staff, and analysis of longitudinal data obtained from patient interventions in both hospital and community. Evaluating patient outcomes This programme reduced the patient’s burden of travel and the additional pressures on their family of having to make repeated journeys to the hospital. For the majority of patients in the study, the return hospital trip was 1½–2 hours (an average of 60 km). Patients appreciated not having to travel for all of their care, particularly at times when they were weak and unwell. They also valued having aspects of their care delivered at home, and they reported that it improved their quality of life. Evaluating nursing outcomes A benefit for nursing included an increased scope of practice for the community nurses involved, but the additional workload, particularly within an already stretched service, was identified as a challenge. By its nature, the timelines and immediacy of some cancer interventions resulted in rescheduling of other non-cancer patient visits and clinics. There was a dramatic decrease in hospital attendances for defined clinical procedures that were then performed in the community. Consequently, hospital capacity was improved and no adverse patient events occurred.

Shifting oncology care to the community can have a positive impact on the patient’s quality of life

an integrated approach to patient care and delivering appropriate care in the community, the potential exists to meet the growing demands of oncology care. The community nursing service has adapted and expanded to embrace this new initiative, and has increased its scope of practice and its partnership with hospital staff caring for cancer patients. This programme demonstrates that safe, seamless, efficient nursing care can be delivered so long as there is prior and extensive planning, detailed collaboration and efficient leadership. Shifting oncology care to the community can have a positive impact on the patient’s quality of life and can improve hospital capacity through shared working. In line with the National Cancer Nursing Strategy,5 this programme will be extended nationally as third-level educational accreditation has been obtained. It will require ongoing evaluation and local planning and development with clinical leaders in charge of resources. The potential for improvement for cancer care in Ireland through shared working between hospital and community staff will continue to be promoted and maximised in the future.

Details of the references cited in this article can be accessed at www.cancernurse.eu/communications/eons_newsletter.html The National Cancer Control Programme (Ireland) provided funding to Letterkenny General Hospital for the national pilot project. The National Cancer Control Programme, working in conjunction with local hospital and community clinical staff and educators, led the design, collection, analysis and interpretation of data of the national pilot project. The ‘Community Oncology Nursing Programme Policies, Procedures and Resource book’ was funded by the National

Maximum potential for improvement This programme has been successful in terms of quality of life for patients. By taking

Cancer Control Programme (Ireland), Health Service Executive (Ireland) & Office of the Nursing and Midwifery Services Director (Ireland).

Smart diagnosis: New technologies bring supportive cancer care up to date At a time when all patientsâ&#x20AC;&#x2122; records are being computerised, new user-friendly tools are transforming communications between cancer patients and healthcare providers. They can now provide a comprehensive overview of the patientâ&#x20AC;&#x2122;s situation, which makes consultations more efficient, contributes better advice on treatment and improves the flow of information between the various professions and the healthcare system.

Modern technology, such as mobile phones and computers, has set in motion new areas for communication between the patient and the healthcare provider (HCP), providing information and decision support. Eir is a software for symptom assessment, com-

pleted by the patients at home, in the hospital, nursing home or any other place where the patients are. It also assesses nutritional status and physical functioning. A structured overview of this information is wirelessly transferred to a desktop PC operated by the HCP. Information

about symptoms can be updated later at home, and medical advice can be provided directly from the hospital through the Eir software. Sceptics may argue that this kind of communication will create a distance between the patient and the HCP.

ALAMY

Stein Kaasa, Kari Sand and Sunil X. Raj

However, computerised technology is so widespread that today it has become one of the main tools of communication between people of any age across countries. With all patient records becoming electronic, the time has come to develop efficient and safe methods for collecting patients’ information and to introduce electronic tools for communication between HCPs and patients. This technology is set to develop new arenas for patient communication.

INSUFFICIENT SYMPTOM MANAGEMENT Most cancer patients experience several symptoms at any stage of their disease. Some of the most prevalent symptoms are fatigue, dyspnea, pain, anxiety, depression and loss of appetite.1 Literature reviews have shown insufficient symptom management in cancer care in general,2-7 and that symptoms are underreported and insufficiently recognised during consultations. When patients report symptoms to the HCP, quite often they do not reach the level where decisions are made. This constitutes a barrier to communication between patients and decision makers, something computer technology may alleviate. There is therefore a need for a standardised approach to symptom assessment and management, although systematic literature reviews show that such a standardisation is not as high as we would like to see it. For instance, there are too many instruments that measure pain or anxiety, depression and emotional distress, etc. Communication challenges As cancer incidence and prevalence continue to grow, prevalence is increasing more than incidence, because more people are living longer with – or without – the disease. The number of survivors with one or several side-effects or symptoms after curative treatment is increasing. At the same time, there has been a huge shift in where cancer patients are usually treated. Only five years ago, more patients were treated as inpatients than

Eir has been designed as a new communication platform beneficial to both patients and HCPs

today, when most patients are treated as outpatients. At the outpatient clinic, time for communication between HCPs and patients is limited – a consultation could for instance last for only 15 minutes. It is therefore crucial to be able to work more efficiently by applying new technologies. Eir – a computer-based tool Based upon these considerations, a computer-based tool for symptom management, and communication and decision support is being developed. This has encountered several barriers related to new electronic patient record systems, in particular security, which is a major issue in most European countries. On the whole, the flow of information between technology systems and between various levels of healthcare provision and patients has proved to be challenging.

The content of Eir Patients provide information concerning: ●● Symptom registration: pain, dyspnea, numbness in fingers /toes, nausea, vomiting, constipation, diarrhoea, stomach pain, xerostomia, mucositis, fatigue, insomnia, anxiety and depression ●● Performance status

Dynamically organised questions Computerised systems can make communications more dynamic – Eir is not just a transfer of paper-and-pen questionnaires to a screen. At the start, the patient completes an introductory symptom screening. If symptom scores are above a predefined threshold, the patient is asked to complete additional follow-up questions. Subsequently, if the patient confirms the presence of a condition, they will be asked to complete additional questions on that particular condition. Better communication, improved treatment Eir has been designed as a new communication platform, beneficial to both patients and HCPs. It is a user-friendly tool that can make it easier for patients to describe their current situation, and for the HCP to get a comprehensive overview of the patient’s situation, thereby improving the efficiency of the consultations. Eir is likely to provide advice regarding treatment tailored to both professionals and patients. The information given in Eir will be stored and integrated into modern systems for electronic patient records (EPR) for optimal information flow, data storage and long-term follow-up. When this is done in an efficient manner between the various professions and levels of the healthcare system, the patients will have no need to repeat their story. All of these aspects will contribute to improved communication and symptom assessment, and thus improve treatment.

●● Nutritional status ●● Comorbidity Evidence-based guidelines are used as a basis for decision support.

Details of the references cited in this article can be accessed at www.cancernurse.eu/communications/eons_newsletter.html Based on an oral presentation by Stein Kaasa at the 30th European Cancer Congress, Amsterdam, September 2013.

EONS 30th Anniversary Event Thursday, 10 April 2014 The Royal Marsden, London, UK This special 30th Anniversary Event will be held at The Royal Marsden in London, where EONS began in 1984. The event will celebrate EONSâ&#x20AC;&#x2122; achievements and will bring together Presidents (past and present) Board Members (old and new) and other stakeholders to reflect on the challenges and development of cancer nursing over the past 30 years and into the future. This is an invitation only event with a limited number of places.

For further information please contact: anniversary.event@cancernurse.eu

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“This House Believes…” A heated debate on the term ‘personalised medicine’ The last session on the third day of the congress was devoted to a debate on the motion, “This house believes that personalised medicine should be re-named personalised treatment and care”. EONS Board Secretary Mary Wells

It is perhaps not surprising that the motion was supported by a nurse and patient representative, and that it was opposed by two doctors. EONS Ex-President Birgitte Grube spoke FOR the renaming of personalised medicine, supported by Jana Pelochova, Secretary and Board Member of the European Cancer Patient Coalition, from the Czech Republic. An oncologist and urologist argued AGAINST the motion: Dr Angelo Paradiso, from the National Cancer Research Centre, Bari, Italy; and Mr Didier Jacqmin, from Strasbourg, France, Treasurer for the European Alliance of Personalised Medicine. The informal vote taken at the start of the debate indicated that all except one member of the audience were in favour of the motion and therefore the renaming of personalised ‘medicine’ to personalised ‘treatment and care’. The two doctors knew they had a fight on their hands! Birgitte was the first speaker, and her presentation focused on the person behind personalised treatment and care, of the need to understand and value the individual in all that we do. Dr Paradiso then responded, making the point that it was too early to change from personalised medicine to personalised treatment and care, because personalised medicine is only in its infancy. In his view, the oncology community needs to make more progress in developing biomarkers and

Mary Wells, the debate moderator, reports...

making these accessible to patients across Europe before widening the concept of personalised medicine. Jana Pelochova spoke next, eloquently providing a patient perspective as a user of targeted therapy and a survivor for 11 years. She argued that the concept of personalised medicine was too narrow, and that all aspects of treatment and care should be personalised: prevention, communication, psychological support, surgery, chemotherapy, radiotherapy, hormone therapy, the management of adverse effects, rehabilitation and palliative care.

RAISED EXPECTATIONS Mr Jacqmin drew together the arguments against, challenging the relevance of the question and suggesting that everyone has a slightly different interpretation of the concept anyway. He pointed out that the concept may have raised expectations and that it is not easy to explain to patients that they may not be candidates for personalised therapy. There were some excellent questions from the floor, with members of the audience suggesting that the two concepts of personalised medicine and personalised treatment and care were not mutually exclusive, and that the problem was in the word ‘personalised’ because it suggested this was something new and available to all. On the one hand, every patient with

cancer should expect personalised care, but not every patient could benefit from personalised therapy. It was pointed out that we had to live with the concept of personalised medicine because it was already here. What this debate highlighted most for me was that language and perceptions are vitally important. The terminology we use conveys a powerful message to patients. When we use words and invent new terms and concepts for the treatment and care we provide, we must be careful that everyone understands what these actually mean. At the end of the debate, it seemed the opposing sides were really talking about the same thing. The concept of ‘medicine’ encompasses more than just the targeted therapies we use. It is what nurses, doctors and patients understand personalised medicine to mean that is important. When we took the vote, some had been convinced by the doctors and changed their vote, to oppose the motion, but both sides felt that they had won. The theme of the ECC was multidisciplinarity, and this debate was truly multidisciplinary. We all went away feeling stimulated by the discussion, and realising that patients, nurses and doctors work best when they talk to each other and consider each other’s point of view. Mary Wells is Professor of Cancer Nursing Research & Practice at NMAHP Research Unit, University of Stirling.

EONS ANNIVERSARY

The European Oncology Nursing Society is celebrating its 30th birthday! By EONS Board member, Paul Trevatt.

On Thursday 10 April 2014 the European Oncology Nursing Society (EONS) celebrates its 30th anniversary. To mark this symbolic milestone a one-day celebration is being held in London at the Royal Marsden Hospital, where EONS started all those years ago. The celebration event is the first of a number of anniversary-themed activities to be held during 2014 and will be an opportunity for cancer nurses from across Europe (and beyond) to gather together to celebrate previous successes and accomplishments and to look to the future and identify where EONS needs to be to move forward. EONS has a substantial legacy programme and is recognised by the cancer nursing community for leading the way on cancer nursing education and research across Europe, driving forward improvements in patient care and empowering cancer nursing among its member countries. Championing causes While most nurses will associate EONS with education or research over the last 30 years, the charity has been growing as both a political and policy body, championing the causes of both cancer patients and cancer nursing in relation to Europe and the various powerful healthcare (and non-healthcare) organisations and agencies that inform and influence it. In terms of advocacy and transformation leadership, EONS is ideally placed to speak on nursing issues and cancer patient care across different countries and care settings, and represent a membership that is vast and varied.

Based on the philosophy that the whole is greater than the sum of its parts, EONS represents over 22,000 nurses and acts as the largest single collective of cancer nurses across its membership states. EONS at a senior policy level leads with a quiet authority and determination and is able to make the case for cancer nursing and improved patient care across Europe and internationally.

before in the charity’s history. The day will begin with a welcome address from both the new EONS President, Erik van Muilekom and Shelley Dolan, Chief Nursing Officer of the Royal Marsden Hospital, who will talk about the impact that EONS has had on cancer patient care and the promotion of cancer nursing as a specialist profession. Presentations will be given from a number of the cancer nursing societies who will each describe their relationship with the charity and what this has meant for cancer nursing in their country and its development. Previous EONS award winners will offer updates on the scholarships and bursaries that the charity gave them and how this has influenced cancer patient care and outcomes at home. Lastly, there will be an interactive session with 10 of the EONS former Presidents who will be able to reflect on their time in office and the issues and challenges that they faced, both within cancer nursing but also across the larger canvas of European history and politics. The event will be captured within a special edition of the EONS magazine to be published this summer.

THE IMPACT OF EONS

Paul Trevatt is Strategic Clinical Network Lead

Our one-day event hopes to capture the spirit and flavour of that which has gone

for Cardiovascular and End of Life at NHS England (London region).

The European Oncology Nursing Society presents:

www.cancernurse.eu

EONS 9 Autumn Convention

Istanbul, Turkey 18-19 September 2014

SAVE THE DATE!

Two days of specialist cancer nursing educational workshops, scientific news, and networking opportunities at the Military Museum and Cultural Center in the lively city of Istanbul.

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