EONS Magazine Spring 2014 by European Oncology Nursing Society

N U R S I N G

A T

T H E

H E A R T

O F

P A T I E N T

C A R E

Spring 2014

Cancer Nursing Research Research excellence â&#x20AC;&#x201C; a must for evidence-based care

The new EONS Research Travel Grant

20 years of cancer nursing research

Theresa Wiseman

Ylva Hellstadius

Jessica Corner

Contents Editor-in-Chief: Helen Oswald Executive Editor: Clair Watts

Spring 2014

CANCER NURSING RESEARCH

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

Board Editors’ introduction

Evolving with our partners

The EONS membership survey

Perspectives from Iceland and Slovenia

EONS Secretariat: Avenue Mounier 83, 1200 Brussels, Belgium 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, Hoffmann-La Roche

10 7th ESO-EONS Oncology Nursing Masterclass

and Takeda for their continued support of the Society as sustaining members.

Research excellence – a must for evidence-based care

The Research Working Group and critical thinking

How Research Proposal Workshops help

EONS Major Research Grant

The Research Travel Grant

Researching in a time of financial crisis

EORTC – pioneering quality

Nursing research brings better cancer care

20 years of cancer nursing research

Print run: 1,400 copies. Electronic version accessible to 20,000 EONS members. Design and production: © 2014 HarrisDPI. www.harrisdpi.com Printed by: Richline Graphics Ltd. www.richline.co.uk Cover Illustration: Jason Cook 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 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.

Now you can read EONS Magazine any time, anywhere, on all your devices with a new app. Install the app by going to http://bit.ly/IssuuOnAndroid

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

EDITORIAL

Oncology nursing and research Board Editorial Mary Wells & Lena Sharp

e are delighted to present this edition of the EONS magazine, devoted to a topic which we feel passionately about! Research is one of the four pillars of the EONS CARE strategy, and the articles in this magazine illustrate the range and depth of current research activity in cancer nursing across Europe. Although many oncology nurses are expected to engage in research as part of their everyday work, we know that this is often difficult. Direct clinical care, education and management duties are frequently prioritised over research, and many nurses lack confidence in their research skills. However, as this edition of the magazine shows, there are many ways in which cancer nurses can be involved in research at a range of different levels. Over the last few years, EONS has introduced several new research initiatives to build research capacity, capability and confidence in cancer nurses throughout Europe. On pages 18-19, Brendan Noonan, Michela Pireddi and Melissa Warren reflect on their experiences of taking part in the first EONS Research Proposal Workshop, and on pages 23-25 Ylva Hellstadius writes about the way in which she used the Research Travel Grant to develop collaboration and expertise in oesophageal cancer and emotional

recovery following surgery, in order to target appropriate supportive interventions to reduce patientsâ&#x20AC;&#x2122; suffering. Through the eyes of several active cancer nurse researchers, including Theresa Wiseman, Lena Sharp and Andreas Charalambous, the benefits and challenges of conducting research in the real world are presented. Articles from the European Organisation for Research and Treatment of Cancer (EORTC) and the European Society of Surgical Oncology (ESSO) provide a European perspective on the importance of collaborative and multidisciplinary working. And finally, the first Professor of Cancer Nursing in Europe, Professor Jessica Corner, provides her insights into the past 20 years of research in cancer nursing, showing just how far we have come. In the context of an ageing population, increasingly complex treatments, financial constraints and changes in the organisation of cancer care, nurses face an enormous challenge in generating the evidence we need for practice. However, one thing is sure. Cancer nurses have the skills, practical knowledge and understanding of what matters to patients, making them ideally placed to contribute to meaningful research now and in the future. We hope you enjoy reading the magazine!

Mary Wells is Professor of Cancer Nursing Research & Practice, NMAHP Research Unit, University of Stirling. Lena Sharp is Chief Nursing Officer, Researcher and Patient Safety Coordinator at the Department of Oncology, Karolinska University Hospital, Stockholm, Sweden.

ESSO34-Ad-Nursing Track-180x108.indd 1

19/03/14 13:45

EONS is evolving with its European partners As many EONS members will know, EONS is proud to be one of the six founding members of ECCO, the European Cancer Organisation, which represents over 60,000 professionals in oncology and promotes interaction between all organisations involved in cancer at European level. ECCO is currently reviewing its structure and exploring the possibility of becoming two separate organisations: one, a ‘for profit’ organisation delivering congresses such as the biennial European Cancer Congress, or ‘ECCO congress’ as many know it; the other, a ‘not for profit’ organisation delivering a range of beneficial not-for-profit activities. The changes at ECCO, plus recent

changes to the tax and VAT environment in Belgium, have meant that, in turn, it is the right time for EONS to review its own structure and status to ensure that we can continue to enjoy the benefits of this collaboration. Experts have been engaged both in the UK (because EONS is a UK charity) and Belgium to assess the legal, financial and regulatory requirements and provide the EONS Board with options. It seems that EONS is free to choose where it wants to be located, to protect its interests. Early findings seem to suggest that EONS would benefit from a change to its office location. As EONS operations are delivered from a small office in Brussels with a team that is almost a ‘virtual’ structure,

we anticipate that any change to the office arrangements would make no difference to the running of the society or the delivery of the benefits and services that members enjoy. It would, however, benefit the society from a financial perspective, making a more stable administrative base for its long-term future. Whatever changes emerge from this process, members can be confident that EONS’ mission to reach out to all our European members will remain as strong as ever and our robust pan-European ethic will continue unchanged. We invite members to keep updated on further developments via the EONS website: www.cancernurse.eu EONS Executive Director Clair Watts

LATEST NEWS

EONS Membership Survey ‘A position of strength’ The 2013 EONS Membership Survey was conducted early last year. The results of the online questionnaire covered details about members’ working patterns and lives, plus information about their thoughts on EONS itself. IN SUMMARY THE SURVEY FOUND THAT: ●● Overall,

the majority of respondents were either satisfied or very satisfied with their membership of EONS ●● the main benefits of EONS membership were seen as being part of a large European network of cancer nurses that was professionally important and supportive to their careers ●● the main role of EONS was seen to be increasing the profile of cancer nursing to help its recognition as a distinct speciality. EONS should continue to work with national (country) cancer organisations and national nursing bodies to achieve this.

The survey asked respondents about key aspects of EONS’ work. Here is a brief summary of what members felt about these: Communication: The internet and EONS website Access to the internet was seen as good for most nurses, with almost 80% saying that at least 50% of nurses in their country had easy access to the internet. The EONS website was popular among respondents, with 59% visiting the EONS site at least once a month. However, there was some lack

of knowledge or awareness of specific parts of the website. Since the survey, the EONS website has been reviewed and redesigned to address these issues. Education Academic qualifications held by respondents are wide ranging, however 59% stated that their hospital or service did not require all nurses caring for cancer patients to have a qualification in cancer care. The provision of online education and training courses was regarded by members as some of the most valuable activity undertaken by EONS. The opportunity to take part in educational and research projects was seen as one of the main benefits of EONS membership. After the website, the most valued activities (rated either as important or very important) were ‘masterclasses’ (87%) and ‘online education’ (88%). Research The opportunity to take part in educational and research projects was seen as one of the main benefits of EONS membership. Fourteen per cent of respondents said their primary function was research, and of those undertaking research the top three areas of research expertise were 1) clinical trials 2) implementation of evidence into practice, and 3) clinical intervention.

The research section on the EONS website was described by 73% as either useful or very useful. However, 29% of respondents said they did not undertake research, and 16% were not aware of the research pages on the EONS website. All EONS research activities were seen as either very important or important by over 80% of respondents. Within these topics, the three areas with the highest response were end of life care, cancer survivorship and symptom management. Conclusion Dr Tom Powell, of Cardiff University, who analysed the survey results for EONS concluded: “EONS is in a position of strength as it is well regarded by its members for the work and activities it undertakes. Putting in place a continuous programme of consultation and development aided by regular member surveys is a clear way to build upon this.” Some key recommendations ●● Work with relevant stakeholders to promote cancer nursing in Europe. ●● Increase awareness of key sections of website. ●● Increase response rate to future surveys. ●● In-depth review of training courses provided, their delivery mechanism and uptake by members.

PERSPECTIVE

Perspectives from Iceland and Slovenia The Icelandic Oncology Nursing Society Halldóra Hálfdánardóttir, of the Icelandic Oncology Nursing Society, provides an insight into the issues for oncology nursing in her country.

Our society totals about 110 members from all parts of the country and Icelandic cancer nurses living abroad. The society was founded in 1996 with the kind support and encouragement of Kathy Redmond, former EONS President. The society has a board of seven: president, president elect, treasurer, secretary and three board members. Our main role is to promote primary and secondary prevention of cancer, and to increase the quality of nursing care provided to cancer patients and their significant others. Our main objectives are, for example, to provide consultation to the board and committees of the Icelandic Nurses Association; influence government policies regarding prioritising in healthcare; promote oncology nursing education; promote empowering cancer patient education; encourage collaboration between oncology nurses; promote and encourage collaboration between oncology healthcare workers, and encourage oncology nursing research and the utilisation of research findings. Each year, in the autumn, we have a seminar that is dedicated to a specific theme. Sometimes we have a key speaker from abroad. Last year’s themes, for example, were: cancer survivors; pain management; communications; cancer and sexuality.

Cancer care across Iceland In Iceland, 1,400 people are diagnosed with cancer each year and total of 12,000 are cancer survivors. More than 90% of patients get treatment and care at The National University Hospital of Iceland, Landspitali (LSH), including surgery, chemotherapy, radiation, autologous stem cell transplant, specialised palliative care and rehabilitation. In LSH, we have the ambition to provide quality care and in order to achieve that we’ve had a number of improvement projects, for example: distress management (screening and guidelines, primarily at the out-patients wards); symptom screening (ESAS); end of life care (Liverpool care pathway); family nursing (Calgary model); pain resource nurse; cancer and sexuality (integrating oncosexology). Besides LSH, we have two support centers for cancer patients and their families, one is called Ljósið (The Light) and the other is a part of the Icelandic Cancer Association. In the past two decades, many important clinical and educational developments have occurred in oncology nursing in Iceland. The increasing prevalence of cancer, improved survival rates, and the majority of patients being treated in all phases of cancer in the out-patient settings, is an important challenge to the health care system. Therefore it is important to maintain competent oncology nurses.

Halldóra Hálfdánardóttir

Slovenia Oncology Nurses Section Report by: Marjana Bernot This year is a very important one for the Oncology Nurses Section of Slovenia. In the middle of January we elected the new board members and the new President of the section, Ms Gordana Marinček Gari. How are we organised? Nurses in Slovenia are joined in one society called the Nurses and Midwives Association of Slovenia which is a professional, non-governmental, non-profit association and also a regulatory body. It is affiliated to the International Council of Nurses (ICN), the International Confederation of Midwives (ICM) and the European Federation of Nurses Associations (EFN). It consists of 11 regional organisations and 31 specialist groups; one of the specialist groups is our Oncology Nurses Section. The Section was established in 1987 and we have been a member of EONS since 1989. This year, eight new board members were elected for a term of four years. Five members are delegates from the Institute of Oncology Ljubljana and three represent health institutions from

Nurses of the inpatient ward receive gifts of thanks from a patient’s family.

Some of Slovenia’s new and past board members

other regions of Slovenia. They were chosen to cover special interest areas: surgical oncology, radiotherapy, medical oncology, assessment of pain and palliative care and research.

Issues and challenges The main issues and challenges are sharing knowledge and best practice and exchanging information and experience. The Section is also involved in the preparation of the educational programme for cancer nurse specialists. One of the main goals is to get the best quality and safe oncology nursing care for patients with cancer no matter which region they are treated in. The Section’s activities are patient oriented, directed toward integration of evidence-based practice, a multiprofessional approach to care, improvement of team organisation and the development of nursing leadership. We feel it is important to cooperate with similar institutions in Europe, other oncology nurses and members of EONS. We want to be active members and participate in the development of oncology nursing care and in the growth of our profession. If we can contribute to the development of the profession, we do something for our patients and also for ourselves.

EACR-23 will provide an exceptional forum for discussion and enable those working in all fields of cancer research to discuss the latest developments, from basic and discovery-driven translational research through to personalised cancer treatment. The following sessions may be of particular interest to EONS members: M端hlbock Lecture Development of Targeted Cancer Therapies A. Ullrich (Germany) Symposium: Senescence and Ageing Cancer and ageing: rival demons? J. Campisi (USA) Symposium: Cancer Prevention Progress in Breast Cancer Prevention J. Cuzick (UK)

Worldwide prevention of cervical cancer J. Peto (UK) Symposium: Imaging Molecular imaging for personalised treatment of cancer W. Oyen (Netherlands) Mike Price Gold Medal Award Lecture Infections causing human cancers - mechanisms and perspectives H. zur Hausen (Germany)

ESO/EONS 7th Masterclass in Oncology Nursing – a unique experience Ermatingen, Switzerland, March 8-13, 2014 Report by: Co-chairs Anita Margulies, Switzerland, and Lena Sharp, Sweden.

he Masterclass in Oncology Nursing (MON) is an extraordinary collaboration between ESO (European School of Oncology) and EONS, bringing 80 professionals, both young oncologists and nurses, together for a five-day, intensive learning experience. The MON started in 2007 and has continued to grow in content and popularity. The aims and objectives are to support clinically active nurses with knowledge about today’s therapy options, nursing priorities, problem solving, and communication skills. This year, the 7th MON from was attended by 20 participants from12 European nations: Belgium, Denmark, Greece, Ireland, The Netherlands, Portugal, Slovenia, Spain, Sweden, Turkey, United Kingdom and Switzerland.

HIGH EXPECTATIONS During the first day, we worked in groups and discussed clinical practice, future career plans and expectations of the upcoming the week. It was obvious to us that the participants’ organisations had high expectations of what the participants should

deliver when back at work. Many nurses reported that they were expected to change practice, write articles, summarise the week for colleagues and management at lectures and/or workshops. All participants were also asked, several weeks before arriving, to submit interesting patient case studies. Nine cases of particular interest were selected and discussed during the week. Each case was briefly presented by the author and then discussed with the group and faculty. In the first patient case session, we covered three breast cancer cases. Issues such as “chemo-brain”, laser therapy and a variety of mouth washes for oral mucositis were discussed. Questions on evidence and rationale were addressed. We also discussed smoking as a risk factor for breast cancer and new research on this topic. In the second patient case session, the complexity of adherence to cancer treatment was discussed in relation to patients with head and neck cancer and glioblastoma. During the remaining two patient case sessions, side effects and complications after colorectal and urological cancer were discussed, but also end of life care for patients with lung cancer and the complexity of caring for a colleague. Newly included were two “wrap-up” sessions. The participants who did not present case studies, were asked to summarise the joint lectures for all, and report what was new and how it could influence

(Top) Masterclass participants gather for a group photograph in the stunning Swiss surroundings. (Bottom) Elisabeth Eniola Offiong and Sidsel Dragsbæk Holm discuss key nursing topics (Right) Students networked and learned from each other both in and outside sessions

E D U CAT I O N

their nursing practice. All 20 participants were thus actively included in the programme.

SPECIAL TOPICS AND JOINT SESSIONS Special nursing topics covered this year were community cancer nursing, an overview of clinical trials, new aspects of nursing research, teenage and adolescence cancer, sexuality and extravasations. For several years, one of the highlights of the MON has been workshops in communication skills. This year for the first time, these were joint sessions for both nurses and physicians. At the end of the fourth day, a “self-learning” test is given, to help the nurses reflect on what they experienced during the days. The person with the highest number of correct answers receives a small token from ESO for “a job well done”. This year, the prize went to Josien Schaper, from the Netherlands. During the MON, an ongoing evaluation questionnaire gave the participants the opportunity to score the general content, organisation, facilities and individual speakers. We will hear the results shortly. The MON 2015 is already being planned (March 7-12). A call for applications will be posted on the EONS website this autumn. Thanks to the generosity of EONS and ESO an increase of 5- 10 participants for the MON is being considered. Stay tuned to the EONS website! Co-chair Anita Margulies summed up: “We consider the MON one of the most useful, motivating and collaborative events EONS offers its members. The networking and later inclusion of former MON participants in EONS projects proves its worth many times over. EONS hopes that this partnership with ESO to create such a unique experience will continue over the coming years.”

We enjoyed the transfer of expert knowledge and the exchange of multicultural experience as a part of an international audience. We liked the focus on the necessity of continuous research, so as to ensure better evidence-based practice, and that the nursing lectures were orientated to patients’ safety.

Eleni Dimitriadou and Ioanna Tsatsou, officer nurses, Oncology-Haematology Unit, Hellenic Airforce Hospital, Athens, Greece. The most useful information for us was around patient safety, risk assessment, overall survivorship, evidence-based practice and target therapies. When we return to Portugal, we will arrange educational sessions for our colleagues, and apply standardised guidelines.

Fabiana Rebelo, Patricia Borges, Maria Dias – Generalist nurses on a day unit and surgery ward at the Portuguese Institute of Oncology, Porto, Portugal. The highlight for me has been the depth and facts of each lecture. The topics were carefully selected and relevant to my practice. The speakers were definitely very knowledgeable in their various fields and all delivered their subjects in a very clear and understandable manner with visuals and references to support.

Elizabeth Eniola Offiong senior staff nurse in the haematology/oncology chemotherapy treatment unit, Royal Free Hospital NHS foundation Trust, Hampstead, London, UK. I enjoyed it very much! I liked the fact that we were a small group, only 20 nurses from different countries. I feel the lectures I benefited from most were the ones for nurses only – especially when nurses presented their patient cases and we all could take part in a debate.

Nizra Palamar – surgical department, intensive therapy unit, Institute of oncology, Ljubljana, Slovenia. I was surprised that despite the fact that we came from very different cultures and also very different “places” in oncology, we had so much in common. We could easily discuss procedures, obstacles, etc. and then still take a lot from it. I was inspired to try to influence the culture at my unit to think more critically and be evidence based.

Sidsel Dragsbæk Holm, clinical nurse at an oncology ward, Odense University Hospital, Denmark.

Lena Sharp is Chief Nursing Officer, Researcher and Patient Safety Coordinator at the Department of Oncology, Karolinska University Hospital, Stockholm, Sweden. Anita Margulies is a freelance consultant and educator and actively involved in the Swiss Oncology Nursing Society.

Research Excâ&#x20AC;&#x160; a must for The nature of cancer care has seen massive changes thanks to substantial advances in research. The EONS Research Working Group has been unique in providing a European perspective on cancer nursing research leadership. Here, Theresa Wiseman, the UK representative in the group and Lead for Health Service Research at Londonâ&#x20AC;&#x2122;s Royal Marsden, gives an overview of the key issues in cancer nursing research.

Report by: Theresa Wiseman

N Theresa Wiseman

ursing societies worldwide believe that patients and the public have a right to expect their care to be based on the best available research evidence. Within cancer care, this is more pertinent today than ever before. Advances in research, technology and treatments have led to a change in the nature of cancer care. Demographics have shown an upward trend in people getting cancer but improvements in diagnostics and treatment modalities have led to more people surviving cancer1. As a result, the trajectory of cancer has transformed into a chronic disease which includes acute phases and periods of chronic disease management. Many cancer patients will complete their primary treatment and return, more or less, to the same level of health and wellbeing that they enjoyed before their diagnosis. But a significant proportion will experience a wide

OV E R V I E W

ellence – evidence-based care range of distressing long-term problems, such as bowel or urinary incontinence, crippling fatigue or sexual difficulties2. As the consequences of cancer and its treatment can affect a person’s physical or psychological wellbeing, it is imperative that research focuses not just on diagnosis and treatment but on the whole of the cancer pathway. Cancer nurses’ frontline role puts them in a unique position to be able to reflect the needs of patients, carers and families. Cancer nursing research tends to focus on the impact of the disease and its treatment on patients and families, and developing interventions and services to address unmet needs. The growth of Advanced Nurse Practice roles and nurse-led cancer care, coupled with increased numbers of nurses with Masters and PhDs, have raised capacity for research. The importance of research to cancer nursing practice seems obvious. Yet for research to be fully integrated and applied, ownership and identification needs to come from people in practice. In the current climate of reduced resources, increased patient numbers, more demands on staff and recruitment and retention problems, it is important to have strong leadership and support for cancer nursing research in practice. Developing research capacity and a clinical academic interface in cancer nursing helps attract and retain interested, innovative people, which is fundamental to tackling health challenges in the future.

LEADERSHIP Strong leadership is required, both clinical and academic, to support research and development opportunities for nurses and midwives in practice.3,4 The barriers to research in practice are numerous (see Table 1, p15) so it is important to focus on drivers to gather momentum. Key drivers include structured organisational support systems and strong nurse leadership which is needed at local, national and international levels to advance the cancer nursing research and development agenda. The number of strategic nurse research roles is increasing throughout Europe. There is recognition that a structured organisational approach is needed

to build cancer nursing research and research capacity. At a local level, in my role as Strategic Lead for Health Service Research at London’s Royal Marsden NHS Foundation Trust, I devised a research strategy to encompass the healthcare research we were planning/conducting, so that it gave people a framework in which to situate their research and connect with others. The programme comprises four key work streams: ●● Reframing

life and wellbeing for people affected by cancer; ●● Enhancing psychological adjustment and promoting emotional resilience; ●● Improving assessment and management of the consequences of cancer and treatment; and ●● Patient safety, quality and acute/critical illness in cancer. Our goal is that service is driven by research excellence, and research is driven by service development requirements. We see patient and public involvement in research as crucial, and have a Patient/Carer Research Advisory Group, which advises researchers on projects. At a national level, the UK National Cancer Survivorship Initiative (NCSI) joined with Macmillan Cancer Support to fund a collaborative programme of work (Consequences of cancer and treatment collaborative, CCAT) involving 12 clinical academics in cancer care (nurses and allied health professionals), who would influence

RESEARCH OPPORTUNITIES FOR EONS MEMBERS INCLUDE: ●● Research Travel Grant ●●

Major Research Grant

●●

Novice Research Dissemination Award

●●

Research Proposal Workshop.

www.cancernurse.eu/research/index.html

policy, practice, and champion research and service re-design for people living with and beyond cancer. Three members of that group work at the Royal Marsden NHS Foundation Trust (Natalie Doyle, Isabel White, and myself), while two members are EONS Board Members (Mary Wells, Sara Faithful), thus providing a European perspective on cancer nursing research leadership. I also sit on the EONS Research Working Group, which provides leadership and support to encourage research activity and collaboration amongst EONS members, national societies, external supporters and patient groups. The Research Working Group has representation from most member countries and our role is to share expertise and develop opportunities for EONS to enhance its profile as an organisation that supports evidence-based cancer nursing through the development and implementation of research into practice.

BUILDING CAPACITY AND TRAINING

Natalie Pattison,

In order to provide support within the research process and to foster interest, practitioners need an infrastructure for support. At the Royal Marsden, we have a system whereby clinicians who want advice/input on health service research, mixed methods or qualitative methods contact members of the research team for advice and collaborative working. There are a number of multiprofessional studies already being conducted in the Trust. Nursing and allied health professional researchers, novice researchers, or those conducting MSc

a senior nursing research fellow at the Royal Marsden

Our goal is that service is driven by research excellence and research is driven by service development requirements.

OV E R V I E W

clinicians, as well as establishing a development scheme to offer a framework for more junior colleagues to build an academic career. The Trust is developing a career development structure whereby academic progression can be achieved alongside clinical advancement. Joint appointments (between university and Trust) may be one way of achieving this, so that individuals are facilitated to integrate senior clinical and research activities within their posts as evaluated via integrated clinical academic post metrics agreed by both organisations. These posts are being developed throughout Europe, so it is hoped that this will contribute to maintaining cancer nursing research in practice.

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

PERCEIVED BARRIERS TO NURSES’ USE OF RESEARCH Characteristics of the organisation (setting) ●● Insufficient time to implement new ideas ●● Lack of authority to change ●● No time to read research ●● Inadequate facilities for implementation ●● Physician non-co-operation ●● Lack of staff support ●● Results not generalisable to own setting Characteristics of communication (of the research) ●● Statistical analysis cannot be deciphered ●● Research reports/articles not readily available ●● Implications for practice unclear ●● Research not reported clearly

CLINICAL ACADEMIC PATHWAYS

Characteristics of the adopter (nurse)

The Royal Marsden has nursing and allied health professional staff at each stage of the clinical academic career pathway. This includes 15 at postdoctoral level, eight at doctoral level, numerous at post-graduate/post MSc level and some enthusiastic nurses at graduate level, just beginning their career in oncology, who would be suitable for the Research Masters (MRes) pathway. The Trust would like to consider the creation of some jointly funded clinical academic posts for senior research active

●● Unaware of research ●● Isolated from knowledgeable colleagues to discuss research ●● Does not see the value of research for practice ●● Unable to evaluate the quality of the research Characteristics of the innovation (research) The research has not been replicated (as appropriate)

ADAPTED FROM CARLSON AND PLONCZYNSKI.6

research are allocated a principal investigator (PI) for mentoring and guidance. There are currently 11 PIs. The PI will provide mentorship for any application for funding, preparation of documents for the Research and Development department and ethics approval, direct and support the conduct of the study together with preparation of the dissertation and subsequent publications. Funding for cancer nursing research has been much reduced over the last 10 years so clinical nurses will typically start by applying for a small research grant and gradually build up. It is important for nurses developing clinical academic pathways to collaborate and team up with a university cancer nursing group. For clinical staff on doctoral programmes (eight current, two about to begin), the Lead for Health Service Research provides six weekly meetings to facilitate individual progress, the research process and critical discussion. Within the Trust, we have a track record of identifying and working with suitable staff members to develop a cohort of doctoral students to build research capacity and clinical academic leadership among nurses and allied health professionals. In addition to mentoring and advice, there are monthly “research coaching” sessions, where practical issues and methods are discussed. They include sessions on aspects of both quantitative and qualitative methods and are multi-professional. These sessions are open to all Trust employees, are video-linked across both sites and lunch is provided. They are very well subscribed. Numerous departments also have “journal clubs”. The EONS Research Working Group supports capacity building for European cancer nurses with a wide range of research activities through initiatives such as grants and workshops. The Group has also put together some suggested “useful resources” on the EONS website for clinical nurses in researchrelated endeavours.

EONS Research Working Group brings in a culture of critical thinking Overcoming cultural barriers Jorge Freitas is the Portuguese representative on the EONS Research Working Group. Here he describes what this involves and how it benefits his professional life and research at the Portuguese Institute of Oncology, Porto. He also explores cancer nursing research in Portugal. Serving on the EONS Research Working Group has been a challenge for me, but also an opportunity to develop research in oncology nursing, in collaboration with the Portuguese Oncology Nursing Association (AEOP). A culture of critical thinking and the ability to formulate research questions that can be answered are useful for the development of clinical care and fundamentally necessary for the acquisition and exchange of knowledge of clinical practices. It is equally important for the development of European research to define a European platform for lines of inquiry that may be similar across the different countries and can be considered and implemented by several European nursing associations and societies. European countries have different barriers to development and implementation of research and the working group can develop strategies to help nurses and local organisations reduce and overcome these barriers. By facilitating and promoting access to the scientific activities of European nurses, the working group should promote strategies, including the identification of

Jorge Freitas

reference oncology hospitals, to facilitate the development of local research, with the contribution of associations and local societies. These institutions can work as networks, with EONS having a facilitating role in collaboration with the Research Working Group. Research projects must comply with European Commissionâ&#x20AC;&#x2122;s European Research Area and should meet the needs of their specific research. In Portugal, research in oncology nursing is primarily focused on academic work â&#x20AC;&#x201C; Masterâ&#x20AC;&#x2122;s theses and work in different nursing specialties, where oncology is one of the specialisation areas but not a speciality in its own right. Therefore there is a more limited development of research purely in oncology.

Research in clinical practice is poorly structured, creating difficulties in the development of scientific evidence-based nursing. Hospitals and units do not have an enabling framework for the development of research. In many situations, they create barriers to nurses and associations in obtaining permits and support to do research. Furthermore, there is a gap in evidence-based nursing where nurses are able to produce and publish scientifically-validated knowledge from the research needs of each hospital and greater interconnection with the Portuguese Nursing Schools. These barriers have created a severe constraint on the production of knowledge. On the whole, Portuguese nurses are well-prepared to develop scientific research, and most cancer centres have good logistic conditions, but there is a missing step in the inclusion of a research culture. The existence of our association and its active role in discussing these difficulties must contribute to the reduction of these barriers. I strongly believe that the future of oncology nursing research in Portugal will be developed within this challenging environment and could also make a good contribution to European Oncology practice. Jorge Freitas is Vice-President of the Portuguese Oncology Nursing Association (AEOP), and Coordinating Editor of the influential Portuguese oncology nursing magazine, Onco.news.

I N D I V I D UA L VO I C E S

Imagine attending your first EONS Advisory Council meeting and giving yourself a life-changing experience by joining the Research Working Group. Iveta Nohavova explains what it meant for her. My first participation at an EONS Advisory Council meeting took place in Ljubljana in 2012 – indeed it was the very first council meeting to include any representative from the Czech National Nurses Association oncology group (CNNA-OG). At the end of the meeting, I was encouraged by Professor Daniel Kelly to apply to join the Research Working Group. I could not predict how this experience would influence my professional future. Members of the Research Working Group are chosen in a way that allows them to balance and complement each other. The group consists of novices, moderately experienced and very experienced nurse-researchers from clinical

Bringing it all back home

Iveta Nohavova

and academic settings. As a member of CNNA-OG, I try to bring to the group a perspective from my own experience, coming from a central European country where nurses still take little part in international events and are only slowly starting to gear up to doing cancer research. At the same time, as a member of EONS Research Working Group, I try to ‘bring it all back’ to the Czech oncology nursing community. I hope that nurses across specialties will benefit from EONS activities. I want to promote EONS and its programmes and help nurses to get actively involved. This is all made possible due to active support from the Board of the Czech Nurses Association-Oncology. Iveta Nohavova is currently a stay-athome mum and is on maternity leave.

Czech nurses keen to do research at EU level Here, Veronika Di Cara, a member of the Executive Board of the Czech Nurses Association, provides another perspective on the Czech experience. The Czech oncology nursing community can boast an impressive range of academic research and they are keen to get more involved in research at a European level. Czech oncology nurses are investigating a wide range of topics at Master’s level including the following: ●● The impact of an oncology diagnosis in childhood on the later life of the patient. ●● The nutrition needs of oncology patients. ●● Pain assessment in an inpatient facility. ●● Compliance with standards of care while administering cytostatics. ●● Burnout syndrome in oncology nurses. Czech nurses also participate actively in multiprofessional and international

research teams investigating specific oncology topics, such as: ●● the impact of HEPA-filtered rooms on the incidence of pneumonia in patients after a stem cell transplant.1 ●● the current responsibilities of nurses who care for patients with breast cancer and the potential for introducing advanced nursing roles in this area2 and using modern communication technologies to educate oncology nurses.3 Cancer nurses also work as clinical research associates, conducting and supervising official clinical trials for new drugs. However, there are not many national studies on nursing topics in oncology, and international collaboration in this field could be more extensive. The Czech National Nurses Association currently has the human resources necessary for

Veronika Di Cara

participation in an international research project investigating important aspects of oncology nursing, and would be more than happy to cooperate at the EU level in nursing research. Veronika Di Cara is a member of the Executive Board of the Czech National Nurses Association. Details of the references cited in this article can be accessed at www.cancernurse.eu/ magazine

From clinical problem… to carrying out research EONS Research Workshops bring together nurses from all over Europe to develop their ideas. Here three participants of a workshop in the UK in 2011, describe how three days of sharing ideas and intense debate gave them the confidence to develop their research proposal, and ultimately advanced their careers. 18

Michela Piredda was a clinical nurse at the University Hospital Campus Bio-Medico. She is now a researcher at the Campus Bio-Medico University of Rome, Italy. The workshop offered a valuable opportunity to learn more about research, to be guided through the research proposal process and to meet wonderful people from all around Europe. We had fun together and I kept in contact with several of them, meeting at international congresses, sharing further information about our projects, and establishing professional collaborations. I found very useful the comments and critiques of my proposal made by both the workshop leaders and participants. Based on these suggestions, and after discussion with my mentor in Italy, I changed the topic of my research, refined it and presented it at the exam for entering the PhD in Nursing at Tor Vergata University in Rome a few months later. Now I’m in the third year of my PhD and conducting a mixed methods multicentre study about oncology patients’ dependence

I N D I V I D UA L VO I C E S

Michela Piredda

on care. The qualitative part seeks to explore through in-depth interviews with patients and a focus group with nurses, how patients’ care dependence is viewed by cancer patients and oncology nurses. The quantitative part measures oncology patients’ dependence and cancer-related fatigue through validated tools and by using and validating the Care Dependence Scale. Since the workshop and throughout the PhD project, I have planned and conducted other studies, including one randomised controlled trial about propolis for prevention of oral mucositis in breast cancer patients receiving chemotherapy; another on different methods of providing information about implanted ports to oncology patients, as well as a longitudinal study on the predictive factors of difficult peripheral venous access. In 2012, I was appointed as fellow researcher at the Ipasvi Centre of Excellence for Nursing Research and Culture. Last year, I left my job as clinical nurse at the University Hospital Campus Bio-Medico and I took up a post as researcher at the Campus Bio-Medico University of Rome. Finally, a few weeks ago, I passed the national exam to become University Associate Professor. I’m very grateful to EONS for the opportunity to attend the workshop, as well as to the great people who run it and participated, making it an unforgettably nice experience.

Brendan Noonan

Brendan Noonan is currently a lecturer practitioner in the School of Nursing and Midwifery, University College Cork, Ireland. My research area of interest at the time was exploring the reasons why patients delay seeking treatment from a primary health care professional for oral cancer symptoms. As a result of the workshop, and through structured work and supervision from an identified research mentor prior to the workshop commencing, what began as a small research project developed, over the ensuing months, into the primary research project for my doctoral studies. As a direct result, I am hoping to submit my completed thesis in the next few weeks. Ultimately, the workshop provided me with a forum to discuss my research ideas and to legitimatise my future proposals. In particular, meeting with inspirational clinical leaders on the final day of the workshop reinforced the real need to conduct research that can have a genuine impact on practice, no matter how superficial it may appear at the time. Of course, there was a social element to the workshop that afforded the opportunity to meet new people, resulting in close working relationships and collaborations that continue to this date. Overall, I truly enjoyed this opportunity and it definitely helped me move on from thinking about doing research to actually doing it.

Melissa Warren

Melissa Warren is a former clinical nurse specialist in secondary breast cancer at The Royal Marsden, UK. She recently moved back to New Zealand and is currently a clinical nurse specialist in cancer care coordination. It was a rare occasion to attend a workshop specifically focused on research for oncology nurses from across Europe, and a great opportunity to build on my experience to date. Having identified a clinical issue for a research proposal, and ideas I might investigate in advance of the workshop, I was able to explore this constructively with workshop peers and an experienced researcher and develop tangible research ideas. The three-day workshop provided me with a supportive learning environment; without a doubt it has been instrumental in developing my confidence and skills in developing a research proposal and set me on the way forward. As a novice, I didn’t appreciate how intense and long the research proposal development phase was – it took significant time to write a full research proposal. But the time and care given, with the help of a mentor experienced in research, proved successful, as my research proposal for the study on Care of people with metastatic breast cancer: Ward nurses perspective was approved. I am fully underway with the study at the analysis phase, with study completion in sight. The next step will be to publish and share the impact of this research on practice.

Lena Sharp and Mia Bergenmar in Washington, where they were invited to present the results from their research at the Oncology Nursing Society (ONS) conference in April 2013.

EONS Major Research Grant An essential resource The EONS Major Research Grant is designed to allow a nurse researcher to carry out a substantial research project which will have an impact on clinical practice in at least one European country. The recipient must be a European oncology nurse researcher, qualified to at least mastersâ&#x20AC;&#x2122; degree level. Report by: Lena Sharp and Mia Bergenmar

Nurses often need significant funding to carry out research, but this is not always available or comes with strings attached. This is where the EONS Major Research Grant comes in. Lena Sharp, chief nursing officer, researcher and patient safety coordinator at Karolinska University Hospital, Stockholm, Sweden, was one of the first recipients. Here she describes how she and her co-researcher Mia Bergenmar used the grant: Acute radiation skin reactions (ARSR) are common among patients undergoing radiotherapy. Many skin care products have been tested, most of them have proven to be ineffective in preventing or reducing ARSR. In November 2008, a nurse approached us with a question from a patient: â&#x20AC;&#x153;The patient has read about Calendula cream. It is supposed to reduce the risk of severe skin reactions. There is a study

published. What shall I tell her?â&#x20AC;? she asked. The study the patient referred to was a randomised trial1 showing that Calendula cream was associated with significantly less ARSR, as compared with Trolamine.These results raised questions. What was the frequency of ARSR at our department? What instruments would be best suited for assessments? We collected data on 93 women undergoing adjuvant breast cancer treatment to gain more knowledge. The results from this pilot2 were useful. The patients reported mild to moderate symptoms. It also became evident that skin assessments may be difficult in terms of inter-observant agreement, and that the choice of assessment tool may heavily impact the results. Education in skin assessments was needed, in order to improve the inter-observer agreement.

F E AT U R E

We decided to compare Calendula cream (10%) with Essex cream (a water-based, perfume-free product, standard care for ARSR at our department) in a larger, blinded randomised trial. We experienced several major obstacles before we could start the study. Funding was a major issue. None of the Swedish research foundations approved our grant applications. The manufacturer of the Calendula cream wished to be involved, but not only with funding. We decided to decline their involvement. We applied for the EONS Major Research Grant and were successful. Without this grant, we would never have managed to complete the research. At first, the Swedish Medical Products Agency approved the study. They then requested that the study should be classified as a clinical drug trial, with the same rigorous control as a chemotherapy trial, meaning that the principal investigator had to be a physician. Two experienced nurse researchers could not run the study, even though patients could buy both products tested without prescription from any supermarket. The regulation also required that a physician should gain the informed consent. This, however, we managed to convince the agency to change and, in the end, they approved our request to allow nurses to obtain informed consent. This was time-consuming process but also very educational. We spent €28,500 of the €30,000 out of the grant to pay the pharmacy. Microbiological testing, repackaging, blinding procedures and delivery from the accredited pharmacy resulted in a tube of Essex cream, that normally costs a few euros, costing €125! The inclusion rate was rapid due to a dedicated team of nurses and well-organised logistics. We used on-line randomisation and completed the data collection (420 patients) in 13 months. The study was published in the European Journal of Oncology Nursing in December 20123. In contrast to the previous study1, our study3 did not show any benefits in favour of Calendula cream. We found no statistically significant differences between the two products regarding symptoms), nor did we detect any differences in quality of life or sleeping problems. The only significant difference we could detect was that the patients reported Calendula cream to be more difficult to apply. With this large database, we also studied risk factors for severe ARSR. The results showed that smoking and high BMI were independent risk factors. This study was published in The Breast4. We also investigated women’s perception of

received information after completing adjuvant radiotherapy for breast cancer. The results showed that about half of the women requested more information. This study was accepted for publication in the European Journal of Oncology Nursing in February 20145. All studies were the result of close collaboration between clinical nurses, managers, a statistician and nursing researchers. The nurses were actively involved and extremely dedicated to a process that one of them had prompted after receiving a question from a patient. We are proud to conclude that the EONS Major Research Grant resulted in four published papers and we recommend other teams to consider applying for it.

One of the RT nurses (Lena Smedh) providing the blinded skin

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

care products to a

www.cancernurse.eu/magazine

patient in the study.

OTHER EONS MAJOR RESEARCH GRANTS MAKE THEIR MARK Competitive but easily accessible, EONS Major Research Grants are giving impetus to substantial research projects that impact on clinical practice. Gianluca Catania and team (Loredana Sasso, Annamaria Bagnasco and Annalisa de Silvestri) IRCCS AOU San Martino IST, Palliative Care Network Unit, Genoa, Italy. University of Genoa, Department of Health Sciences (DISSAL).

Eunice Jeffs Lymphoedema Clinic, Guys Hospital, London, UK

RESEARCH GRANT AWARDED IN 2011 Patient perception of treatment benefit and success in self-management of breast cancer-related arm lymphoedema (BCRL). RESEARCH GRANT AWARDED IN 2013 Lymphoedema is a common side-effect affecting Quasi-experimental trial of a complex nursing approximately one third of patients treated for intervention focused on QoL assessment on advanced breast cancer and it causes significant physical and cancer patients with palliative care needs: feasibility, psychological problems. Adherence to life-long selfGianluca Catania acceptability and potential effectiveness management is considered essential for the treatment Gianluca Catania and his team are carrying out this study and control of swelling, but practitioners do not agree on on palliative care in two inpatient hospice units in Genoa, Italy. what constitutes a good treatment outcome, and it is not known how patients Defining palliative care as an “approach that improves the quality of life of determine treatment effectiveness. patients and their families facing problems associated with life-threatening The 18-month study set out to identify factors influencing the success of illness”, they are focusing their study on modeling and testing the feasibility of self-care measures for lymphoedema and patients’ perception of whether a nursing complex intervention based on QoL assessment using a comparison their swollen limb has improved or not. Up to 25 interviews and concurrent group before and after design. analyses took place over 12 months, using coding to recognise, name, sort, The findings of the study will be used to inform a phase III trial according to compare and organise data to integrate categories and develop theory. the Medical Research Council Framework. The knowledge gained was useful in determining factors to assist and increase successful self-management, and more effectively monitor treatment progress. Manuela Eicher and team (Karin Ribi and Daniel Betticher) Vicki Cleary Vicky Cleary School of Health, Fribourg - University of Applied Science, Catherine McAuley School of Nursing and Midwifery, Western Switzerland University College Cork, Ireland RESEARCH GRANT AWARDED IN 2012 Testing the feasibility and efficacy of two different intensities of an intervention to enhance resilience and to reduce supportive care needs in cancer patients: a phase II trial (RESIL-trial) Teams at the Fribourg School of Health and the Fribourg Cantonal Hospital outpatient cancer clinic are joining forces to develop an intervention aimed at supporting selfmanagement among newly diagnosed cancer patients and specifically promoting patients’ resilience – i.e. their capacity to cope with or to recover from trauma, loss, risks or stress. A two-armed randomised phase II trial is being carried out which involves nurses and oncologists receiving dedicated training on furthering resilience. The resilience and unmet needs of patients are systematically tracked and direct feedback from the latter monitored. Results from both arms are being analysed separately. They are expected to result in new lines of inquiry in other oncology domains and also to lead to developing pertinent supportive care services and enhanced patient empowerment.

RESEARCH GRANT AWARDED IN 2010 Sexuality in women with gynaecological cancer: a nursing educational intervention. According to the U.S. National Cancer Institute, sexual dysfunction is the most common side-effect of cancer treatment, affecting 50% of the survivors of gynaecologic cancers. In recent years, there has been a growing recognition of the need to educate cancer patients on issues relating to sexuality. The aim of this study was to develop and test a nurse-led educational intervention to enhance the sexuality of women with gynaecological cancer. It was carried out following the first two phases of intervention development outlined by the Medical Research Council. Phase 1 assessed a neo-theoretical framework of sexuality, encompassing all the dimensions of sexuality considered to be important to women with gynaecological cancer. Phase 2 was to pilot test the developed intervention and to examine its effects on the sexual functioning, sexual relationships and sexual self-concept of gynaecological cancer patients.

F E AT U R E

Ylva Hellstadius was one of the recipients of last yearâ&#x20AC;&#x2122;s EONS Research Travel Grant, travelling to London in early 2014. She graduated as a nurse in June 2010 and gained an MSc in research methodology in December 2012. Now a full time PhD student at the Karolinska Institute in Stockholm, with a clinical background in palliative care, she talks about her work and how she used the grant.

Bitten by the EONS travel bug 23

y doctoral thesis, entitled “Improved emotional recovery following oesophageal cancer surgery”, aims to investigate emotional adaptation among patients following curatively intended oesophagectomy for cancer with a particular focus on the development of post-operative anxiety, depression, and post-traumatic stress symptoms. But why is the impact on emotional recovery important to study in this patient group? Firstly, oesophageal cancer is a most devastating cancer disease associated with an extremely poor prognosis and an extensive surgical procedure offers the only chance for cure. Despite curatively intended treatment, the five-year survival rate is only 31% and the risk of death from tumour recurrence post-operatively is high. There is emerging evidence that these patients suffer significant emotional distress postoperatively, but evidence from large, prospective and methodologically sound studies are limited. Therefore, I am especially grateful to be one of the recipients of the EONS travel grant 2013, enabling me to complete a research exchange at the Department of Upper Gastrointestinal Surgery at St Thomas’ Hospital and King’s College in London, which has an ongoing comprehensive data collection including all oesophageal cancer cases treated at this high-volume centre. This large-scale data collection is prospective in design and provides high-quality and unique data on the emotional outcomes of interest for my thesis. This research exchange will contribute to new knowledge about the emotional recovery following surgery in this vulnerable patient group, in order to target appropriate supportive interventions to reduce patients’ suffering. Another area of interest includes my ongoing efforts to make research findings more available and easy to implement in clinical practice. I strongly believe this is one of my main responsibilities as a nurse in clinical research. New findings are today communicated mainly through scientific journals and conferences. Few nurses in the clinic are able to access or even to find these results or attend conferences. As a consequence, few important research findings are ever implemented in everyday care and some interventions are even based on nurses’ own experiences rather than evidence. To illustrate this point, a few years ago I worked as a newly graduated nurse in a palliative care setting when a young man was referred to the ward. He was dying and experienced severe pain, but had an

F E AT U R E

on-going methadone addiction. The nursing team was petrified. How do we care for this patient? Some nurses in the team did not want to give the patient analgesics as they believed he was pretending to be in pain – “he is a drug-addict after all”, said one nurse. Other nurses in the team felt sorry for the patient and wanted to compensate by unrestricted drug administration. Some argued that it was our mission to make him clean again – when he only had a few days left to live? Of course, we all tried to handle the situation based on our own experience and ability, but it was obvious that we all argued on the basis of fear and prejudice instead of evidence. The collaboration between academia and the clinic needs to be more clear and transparent. The yearly EONS Research Proposal Workshop is a good example of bringing together nursing research with clinical practice. I was one of the workshop participants in Stockholm, 2012, and the fruitful discussions about clinical problems were, over the course of two days, transformed into research hypotheses and study protocols. This, I believe, is a perfect example of how to combine research and clinical expertise and investigate clinical problems in a systematic way, in order to improve our everyday work and care of the patients. As EONS magazine went to press, Ylva got in touch to say how she was getting on in London: I arrived in London on Monday 10 March and I was at once introduced to the gastro oesophageal research team at St Thomas’ Hospital and we went through the detailed planning of the two coming months. I joined the gastro oesophageal team when they had their weekly round at the ward. I have also started collaborate with the two research coordinators who are responsible for the ongoing data collection at St Thomas’, which two of my studies in my thesis are based on. I will shadow these coordinators when they administer questionnaires to oesophageal cancer patients planned for curatively intended oesophageactomy. I will also attend the following operations. I am sincerely grateful to EONS for enabling me to complete this unique research opportunity. On return to Sweden in May, I will be able to conduct high quality research regarding emotional distress following oesophageal cancer surgery, based on the highly comprehensive data collection and the unique clinical experience I gain at St Thomas’ Hospital during these months. I really hope that this will lead to timely and warranted improvements in the care of oesophageal cancer patients.

About the Award Launched in 2013, the EONS Research Travel Grant helps fund a novice or established researcher to spend time with an established researcher or research group in another country. This allows them to build collaborations and facilitates the development of research proposals.

Other travel grant recipients: NIKOLAOS EFSTATHIOU is a lecturer at the University of Birmingham (Nursing and Physiotherapy). Originally from Greece, his PhD thesis explored perceptions of oncology among healthcare providers and users’ perceptions of oncology care provision in Greece. Palliative and end-of-life care has been his main research interest, and he recently completed a study investigating critical care nurses’ experiences of providing end-of-life care. He applied for the travel grant to visit the Nursing Palliative Care Research and Education Unit (NPCREU) at the University of Ottawa, Canada, with the aim of building further capacity in nursing and inter-professional palliative and end-of-life care research. GIANLUCA CATANIA is a nurse at IRCCS AOU San Martino-IST, a research teaching hospital in Genoa, Italy. He received his MA in Oncology and Palliative Care in 2006 and his MSc in Nursing in 2010. Gianluca is currently a PhD student at the Department of Health Sciences at Genoa University, Italy, and he is particularly interested in the development and implementation of a complex intervention focused on quality-of-life assessment in palliative care practice. The grant was awarded to give him the opportunity to visit St Christopher’s Hospice, in London, UK, to gain insight into factors that have made the implementation of quality-of-life assessment in palliative care practice successful.

The nursing community feels it is an easy target for government’s austerity measures.

Andreas Charalambous is Assistant Professor of Oncology Nursing and Palliative Care, Nursing Department, Cyprus University of Technology

Researching in a time of financial crisis is like sailing through the “Symplegades” The financial crisis that hit Europe in recent years is making it much harder for nurse-researchers to acquire funding for their studies. Research seems to have become a “luxury” rather than a necessity. Nurse-researchers in Greece, Spain, Ireland, Portugal and Cyprus are having to navigate through formidable barriers to ensure they can carry on their important work. In the wake of the economic recession, researchers in Cyprus, in particular, felt that, almost overnight, the problem of funding research left them with no workable solutions on the horizon. Deep cuts in funding for scientific research by governmental and non-governmental organ-

isations and the freezing of all recruitment across university departments and academic institutions were part of the ‘sacrifices’ that the scientific community had to endure. This resulted in ongoing projects (especially randomised controlled trials and interventional studies) slowing down their implementation schedule and even being postponed in some cases, due to the lack of national resources allocated to research. For the same reasons, it has not been possible to start new nursing studies, and nurses have been left to deal with the clinical problems of everyday practice without nurse-researchers being able to offer effective solutions. These are

unsettling times for nurses in Cyprus. The nursing community feels it is an easy target for government austerity measures. This has highlighted the need to promote a scientific research culture in Cyprus as the only way forward. It means we have to turn “back to basics”. Nurses are struggling to convince politicians and other government officials about the importance and the need to invest in scientific research. They are alarmed at the signs that policy-makers have abandoned long-term commitment to promoting research and they are trying to revive this long-term vision. Breakthroughs in the clinical setting, incorporation of technological innovation into everyday clinical practice and tackling pressing quality of healthcare issues, they argue, all require sustained scientific development, from basic to applied research. The nurses also emphasise the emerging role of scientific research in the economic recovery as a source for generating knowledge, innovation and creating new jobs. The Horizon 2020 proposal of the European Commission offers an important boost for researchers around Europe. However, accessing the €80 billion through participating in European research will not be an easy task for the less privileged European countries – in terms of research – including Cyprus. There are signs of some reprieve, as the nurse-researchers in Cyprus appear to be winning the battle for the time being. However, the future of science funding continues to be at risk and nurse-researchers, as modern Argonauts, will have to overcome many “Symplegades” before reaching the Golden Fleece.

Pioneering quality The Quality of Life

Report by: Francesca Martinelli, Efstathios Zikos, Divine E. Ediebah, Deborah Fitzsimmons, Mogens Grønvold and Andrew Bottomley

Group meeting in Canterbury, UK (1213 September 2013)

rom its humble beginning half a century ago, the effort to promote a Europe-wide collaboration in cancer treatment protocols developed into one of the most advanced organisations in modern cancer care – the European Organisation for Research and Treatment of Cancer (EORTC). As well as playing a key role in improving the management of cancer care, it was the first organisation to pioneer quality of life of long-term survivors of cancer with important consequences for clinical research. The story began in 1962, when Professor Henry Tagnon founded the “Groupe européen de chimiothérapie anticancéreuse”. The idea was to promote a multidisciplinary approach and international cooperation in clinical research in Europe. It sounded like a visionary idea at the time, and yet, it was such a big success that, in 1968,

the research group developed into the current EORTC – an independent organisation with the aim to develop, conduct, coordinate and stimulate translational and clinical research in Europe to improve the management of cancer and related problems by increasing survival but also patient quality of life (QoL). In order to advise the EORTC Headquarters and the various cooperative groups on the design, implementation and analysis of QoL studies, the QoL Group (QLG) was created in 1980; the QoL Department (QLD), based at the EORTC Headquarters, followed in 1993.

DEVELOPING VALIDATED MEASURES Many things have changed since the start. Clinical trials were once dominated by clinically-based endpoints and the absence of robust standardised measures made QoL assessment a challenge.

Clinical trials were once dominated by clinically-based endpoints and the absence of robust standardised measures made QoL assessment a challenge

Nowadays, the importance of QoL for cancer patients and survivors is widely recognised by the scientific community. A key step was the development in 1991 of the EORTC QoL Core Questionnaire (QLQ-C30),1 an instrument to assess the quality of life of cancer patients participating in clinical trials. The development of specific, reliable and validated measures overcame the scepticism and QoL is today increasingly assessed in cancer clinical trials, with very important consequences for clinical research. Today the QLQ-C30 has been translated into 89 languages and used in more than 3,000 studies worldwide, which makes it one of the most used instruments for assessing QoL in cancer patients. It is supplemented by a series of modules that focus on disease site but also on other aspects (e.g. age and satisfaction with care) that make up the multifaceted concept of QoL.

THE IMPORTANCE OF ASSESSING QOL Knowing more about the way the disease and related treatment impacts on the patient is important because it allows clinicians and policy makers to provide targeted therapies and support plans where needed (psychological support being just one example).2 QoL research can have an impact on clinical practice too. A famous trial from 20053 showed that adding an oral treatment to the standard treatment in patients with glioblastoma was more effective and had no detrimental effect on QoL â&#x20AC;&#x201C; what was an experimental treatment then, is today the standard of care in glioblastoma, and this is also thanks to the QoL findings. QoL data collected during EORTC randomised

clinical trials are analysed and published either together with clinical data or separately, to infer the impact of cancer and its treatment on the QoL of the patient. The generalisation of the results, however, requires that QoL data are pooled together and robustly measured before, during and after treatment. The Patient-Reported Outcomes and Behavioural Evidence (PROBE) team conducts additional analysis on pooled datasets to answer methodological and key QoL research questions,4 as well as providing prognostic information on survival. The results aim to shed light on many critical topics that are as yet unclear and which could have a significant impact on future psychosocial/QoL care, e.g. individualised treatment. They also characterise the association between time-to-event and longitudinal assessment of QoL to throw light on the tradeoffs between QoL and overall survival.

ONCOLOGY NURSES PLAY A CRUCIAL ROLE To improve compliance and data quality, the EORTC is working on the development of electronic methods to capture patient-reported outcomes to be used in EORTC clinical trials, continuing in this way its dedication to include QoL endpoints where appropriate and improve patient care. An important feature of QoL research is that the focus is on the patient: QoL can in fact be captured accurately by patients themselves.5 This provides a unique and invaluable point of view. Collecting QoL data, however, is not always easy; it is not a coincidence that one of the most common issues that are mentioned while talking about QoL data collection is missing data.6 Oncology nurses play a crucial role in the assessment of QoL. They work closely with cancer patients and support them along their cancer journey, in addition to the many other ways they help, by going through the QoL questionnaires with them, providing and at the same time gaining an important insight. The EORTC QLG includes, among a broad range of professionals, a strong representation of oncology nurses. Their experience is fundamental to improve our understanding of the mechanisms that lay behind the complex concept that is QoL. Communication and collaboration between all the different actors that accompany cancer patients throughout their journey is the key for better understanding and consequently better QoL. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

F E AT U R E

Boost in nursing research brings better cancer care Peter Naredi is Past-President of ESSO and Professor of Surgery at Sahlgrenska University Hospital, in Gothenburg, Sweden. In this personal view, he talks about the importance of excellence in scientific nursing research and its impact on clinical practice.

Cancer nursing research has been steadily expanding in many countries. Despite the quality of published papers being uneven, excellent research is on the increase and has started having an impact on clinical practice. This competence must be harnessed by health providers to create new opportunities for nurse researchers with scientific ambitions. Many developed countries focus strongly on cancer care, and the number of countries with national cancer plans is steadily increasing. Much of the attention goes to personalised medicine, with resources allocated to advanced diagnostics and medical treatments. Despite being highlighted in the national cancer plans, the softer aspects of cancer care lives in the shadow of medical research. Most patient surveys reveal that medical cancer care is increasingly appreciated and many patients feel that, although they receive good treatment, they lack a psychosocial perspective in their care. Patients experience difficulties in developing a consistent contact with the healthcare provider, they suffer from gaps in information, and there are weaknesses in symptom management and rehabilitation both during and after treatment. This is the challenge at the heart of cancer nursing research – to identify true needs and perform evidence-based, well-conducted studies that will lead to a change in clinical practice. Much of published cancer nursing research is descriptive and involves qualitative studies of cancer patients’ response

to the disease and their treatment. As the patients’ psychosocial responses play a key role, it is not easy to conduct studies that have high levels of scientific evidence which results in much of this research being of low quality and based on unclear hypotheses. Worse still, these low-quality research studies will not make any difference to patient care and clinical practice. Bibliometry is not a perfect tool but it can be used to get an indication of the quality of and interest in the subject. Of 106 journals in the ISI Web of Knowledge category Nursing, the highest ranked journal has an impact factor of 2.9 and only six journals have in impact factor of 2.0 or more. Sixty-three journals have an impact factor of less than 1.0 which means that the articles are not cited even once on average. Nursing research is expanding in many countries, but the fast increase in the number of journals and published articles may also lead to a high acceptance rate of low-quality studies that will never be cited and maybe not even read.

This is the challenge at the heart of cancer nursing research – to identify true needs and perform evidence-based, well-conducted studies that will lead to a change in clinical practice.

SOUND SCIENTIFIC PRINCIPLES By contrast, excellent scientific nursing research has proven to be very successful and is widely recognised. The researchers behind these studies do receive large grants and their projects have impact on clinical practice. The nursing profession has been better than the other medical professions in understanding the needs of patients and their relatives. This expanding research field by nurses is expected to lead to the ultimate goal of better patient cancer care. It is important for the scientific nursing profession to protect the quality of the research and not let the satisfaction of an increased research interest from the nursing profession hold back sound scientific principles. The competence built upon nursing research must be used by healthcare providers. It is important that, after finishing their theses, nurses stay within the healthcare system and do not leave it for industry, administration or purely academic institutions. The latter has unfortunately become a common career step, due to the lack of nursing positions that combine clinical work with teaching and research possibilities. For the other medical disciplines, this is by tradition built into the organisation, and therefore new research results are more naturally implemented into clinical practice. A change to the better for nurses with PhD degrees will not come by itself; it necessitates joint action to make our employers understand that these combination positions must also be created for nurses with PhD degrees and scientific ambitions.

Reflections on twenty years of cancer nursing research

Jessica Corner, Dean of Health Sciences, University of Southampton

F E AT U R E

Nurses have played an important role in changing

Report by: Jessica Corner

the culture of the cancer community towards a greater focus on care after treatment. Here, Jessica Corner, the first professor of cancer nursing in Europe, uses her own journey over the years to trace the changes in cancer management.

Twenty years ago I was setting out to build my own research career, having completed my doctorate in 1990. I was in the process of establishing an academic nursing effort at the Institute of Cancer Research and the Royal Marsden, in London, which later led to my appointment as the first professor of cancer nursing in Europe in 1996. My concerns then were twofold. Firstly, surrounded by highly eminent cancer scientists and oncologists, I wanted to shift thinking from an almost exclusive preoccupation with the challenge of discovering the scientific basis of cancer and novel and usually pretty toxic new treatments for the disease, to a position where the person with cancer might be placed more centre stage. I frequently felt angry at the way people with cancer seemed to be secondary to science, and to medical treatment. Secondly, I wanted to consider how nurses might contribute significantly to research into better care and support, and lead the change towards a more person-centred agenda. I gave two public lectures in quick succession: the first Robert Tiffany Memorial Lecture, at the 9th International Cancer Nursing Conference, in Brighton, August 19961, followed by my inaugural lecture at the Institute of Cancer Research in London in November 1996.2 They both created a stir, and led to interviews in the media and some controversy amongst my scientist and clinical colleagues, who felt directly criticised by the position I set out.

I was challenging the status quo. I was pointing out that the then prevailing discourse surrounding cancer of warfare and a militaristic endeavor aimed at helping people with the disease survive, had the consequence that the day-to-day experience of people living with cancer was neglected along with the suffering, distress and disability it caused. I was calling for a radical change whereby this dominant discourse might shift to focus more on people and the everyday problems they experience. I argued that nurses and nursing could make a substantial contribution to this shift which required developing new approaches to symptom and problem management and re-organising services so that they are more supportive. I also argued that nursing itself could be a therapeutic activity and, as such, should be a more integral part of cancer care. The ensuing years were very productive. I worked with colleagues to develop and evaluate nurse-led care for a range of cancer-related problems such as breathlessness, fatigue, ascites and lymphoedema. We also evaluated models of nurse-led care in clinical trials, demonstrating that care could be reconstructed along the lines I had suggested and that placing nurses in charge of such care was safe, effective and positively evaluated by patients. Since that time, other cancer nurse colleagues have taken important work forward demonstrating the value of nurseled care in a whole range of areas. More recently it has been possible

to work using models of participatory research to allow people with cancer to reveal their own priorities for research. Interestingly, these mirrored the priority I set out in 1996. The highest rated research priority was identified as ‘living with cancer day to day’, rather than ‘treatment for my cancer’ as one might have expected.3 This finding has been taken on by cancer research funding bodies, and contributed to the evidence that led to the National Cancer Survivorship Initiative for England (www.ncsi.org.uk), where emphasis is now placed on a major cultural shift among the cancer community towards a focus on care after cancer treatment and on support for self-management around the long-term experience of cancer. Over the 20 years, very significant change has happened in cancer management, with life expectancy now double what it was and long-term survival a reality with many cancers. This means there is a rapidly growing number of people who are living with the disease and adjusting back to the life they led before their diagnosis. This makes it even more imperative that we understand this day-to-day experience and ensure that individuals with cancer are enabled to live life after cancer treatment with high levels of health and wellbeing. Cancer services are being re-organised to reflect the changes. What is especially exciting to see is that cancer nurse researchers are leading efforts around this agenda. Not, however as nurses, ‘doing’ nursing research, but leading multidisciplinary research teams for large and complex, internationally important studies, with commensurate funding. Twenty years ago I could not have dreamed that such a change might occur. Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine