EONS (European Oncology Nursing Society) Magazine - Autumn 2014

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Autumn 2014

EONS-9 Istanbul, Turkey 18-19 September 2014

Celebrating Excellence in Cancer Nursing

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

Autumn 2014

EONS-9 Congress Special

Art Editor: Jason Harris Production Editor: Jim Boumelha Medical Editor: Catherine Miller

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EONS-9 Congress comes to Istanbul

Editorial Assistant: Rudi Briké

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‘A crucial forum’ – the voices of nurses at EONS-9

EONS Secretariat:

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The spiritual care of the cancer patient

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An open mind is the key to excellence

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Mapping the unmet needs of colorectal patients

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The art of assessing pain

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‘Winning this EONS award made us so proud’

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EONS-9 in pictures

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Challenges of living with lymphoedema

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Cancer medication adherence: a cultural perspective

© 2014 HarrisDPI. www.harrisdpi.com

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Two approaches to screening for distress

Printed by:

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EBMT and EONS – Sharing challenges and improving care

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Overcoming medication errors in cancer care

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‘Gems of information’

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

Print run: 2000 copies.

Electronic version accessible to 20,000 EONS members.

Design and production:

Richline Graphics Ltd. www.richline.co.uk Cover Photographs: Jason Harris Disclaimer The views expressed herein are those of the authors and do not necessarily reflect the views of the European Oncology Nursing Society. The agency/ company represented in advertisements is solely responsible for the accuracy of information presented in that advertisement.

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

Author profiles and references can be found for this edition of the magazine at www.cancernurse.eu/magazine Correction: In an article on page 7 of the last issue of EONS Magazine we referred to The European Public Health Alliance (EHPA).

© 2014 European Oncology Nursing Society

We meant, the European Association of Hospital Pharmacists (EAHP).

EDITORIAL

EONS-9 Congress comes to Istanbul

By TONA President Sevinç Kutlutürkan and Immediate Past President Sevcan Atay, with EONS Past-President Sultan Kav

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he Oncology Nursing Association of Turkey (TONA) was honoured and delighted to partner with EONS to host the recent EONS-9 Congress. Both societies welcomed friends, colleagues and partners from all over Europe and beyond to Istanbul.

TONA was established in 1989 and has been proud to be a member of EONS from the very start. (That means that we also share an anniversary this year – 2014 is our society’s 25th birthday, while also being EONS’ 30th anniversary.) We lead oncology education in Turkey and our current strategic plan underlines our important aim to become a national and international leader through a continuous nursing education programme.

Our mission is:“to empower and strengthen oncology nursing, to promote individual and public awareness of cancer and increase the quality of care.” So, it was a key part of making these aims and ambitions a reality that we invested in the congress in order to welcome so many first class speakers and highly motivated nurses to our country, to share their knowledge and expertise and have an inspiring learning experience.

This year’s title was Celebrating Excellence in Cancer Nursing, and we saw oncology experts speak on topics ranging from chemo-induced neutropenia, to screening for distress in nursing practice, to polypharmacy and adherence in cancer patients, to name just a few. As well as the usual speaker sessions and panel discussions, we had a very successful poster exhibition with a record 185 submissions. You can read about many of the sessions and the winning posters in this special congress issue of the EONS Magazine. (Or go online to see more photos, download all of the abstracts and see the programme at

www.cancernurse.eu/communication/eons9.html) A networking evening and welcome reception at the Harbiye Cultural Centre and Istanbul Military Museum provided the perfect opportunity for participants to catch up with old friends, make some new ones and to forge links for future collaboration. There was also a chance to experience some Turkish culture, with an exhibition of traditional dancing and costumes provided by the Republic of Turkey Ministry of Culture and Tourism.

All in all, these two very special days in mid-September offered unprecedented scientific, educational and networking opportunities and those who attended made the very most of them. For those of you who were not able to join us this time, we hope that this edition of the magazine will give you a flavour of some of the key sessions and a sense of the benefits that attending such a congress can bring. We would strongly encourage you to join us in 2016 when EONS will be hosted in either Ireland or Northern Ireland. TONA members will be there…will you?

It’s also not too soon to register for the next EONS event which will form part of the European Cancer Congress, Vienna, and will run from 25-29 September, 2015.

Registrations are already open so why not register now to be sure of your place?

Finally, we would like to thank everyone who helped to make the congress such a wonderful success, especially the EONS Scientific and Organising Committees, the EONS team, ECCO congress staff and last but not least, the loyal support of companies and partner societies without whom it would not have been possible to create such a memorable event.

We look forward to seeing you in Vienna!

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“A crucial forum for exchanging information” – the voices of nurses at EONS-9

Figen Bay Kara

Christina Gallego Miralles

Member of the board of the Oncology Nursing Association of Turkey (Onkoloji Hemsireligi Dernegi), Gazi Üniversitesi Hastanesi, Ankara

Homecare cancer nurse, Barcelona Public Hospital, Spain

My association has a proud record of promoting excellence in oncology nursing and scores of nurses are present here to celebrate this congress. They believe that holding it in Istanbul is recognition of our strength and contribution to the European oncology nurses’ movement.

Turkish nurses see Sultan Kav and Nurgün Platin as pioneers and role models who have elevated our association among the big players in Europe. They have come in large numbers to this congress so they can learn from others, but also contribute a different cultural perspective.

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This is my first EONS Congress.

Like in many other congresses, my general impression is that nurses are working hard but we need to work harder. The economic situation in southern Europe and the resulting squeeze on budgets are creating new conditions for nurses.

In Spain, more and more nurses find it difficult and have to seek jobs outside the country, and this is likely to continue for some time. As well as the sessions about the evolution of the profession and the challenges nurses face today as they manage cancer care, discussions of the crisis of health systems are useful. This congress is an opportunity for nurses to demonstrate that they have the tools to deliver good quality care. It allows for direct exchange and also for making contacts, which are so crucial to strengthening the links between nurses.

Fouad Awada and Sophie Delaunois

Sumattana Glangkarn, Vorapoj Promasatayaprot

Nurse coordinators in cancer care, Institut Jules Bordet, Brussels, Belgium

Faculty of Public Health, Mahasarakham University, Thailand

This is our fourth congress and we consider ourselves as veterans. The congress remains a crucial forum for the exchange of information. Workshops for nurses to share their ideas and talk about their practical experience are a very valuable way for us to learn and develop.

There is a clear gap between nurses who have a recognised status in their country that allowed the profession to evolve, and those who have not – and it is important for all nurses to be members of their association. Part of the crucial work EONS does is to find ways to unite all these voices and fight for a status for all nurses at European level. This is a key political and economic challenge.

As previous visitors to EONS and ECCO congresses, we are continuously in search of new things to learn, and are bowled over by so many sessions to choose from. With no nurses specialised in oncology in Thailand, we have been particularly interested by the way oncology nursing is organised and the massive role it plays in cancer care. As lecturers and researchers in public health, we want to learn more about the nursing contribution to cancer care, in particular in communities, but also about their education. In Thailand, the highest incidence is of hepatic cancer in men and cervical cancer in women, so government puts more effort into prevention than care. We are always open to new knowledge. Being here helps us build strong relationships and, next time, we will bring with us some of our students.

EONS-9 – CONGRESS SPECIAL

The spiritual care of the cancer patient EONS delegates from all over Europe packed the Victory Hall at the Military Museum in Istanbul at the opening ceremony of our congress, EONS-9. The keynote speech was delivered by the doyenne of Turkish cancer nursing, Nurgün Platin, on the theme of spiritual care.

Report by: Nurgün Platin

United under EONS, we share the same goal and commitment: to provide better care for cancer patients; always to reach for excellence. I believe that we have a great power to make a difference in the future, as we did over the past 30 years, under the umbrella of EONS. The spiritual care of the cancer patient will be the topic of my talk, to complement the theme of this year, “celebrating excellence”.

Actually “excellence” is a quality of many dimensions with an infinite destination – the more we learn, know and discover, the more we think we will reach this destination. But we don’t, because the more we learn, know and discover, the more we realise how much we don’t know. The same happens with cancer care. We are indispensable figures with regard to the medical treatment, but are we as indispensable for the patient as an individual? Patients are going through a very difficult period of life, within a crowd of people, but all alone.

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well and Sulmasy2 suggest that spirituality could directly impact on the physical and emotional or psychological outcomes of the patient.

They, and others, such as Dzul-Churh, Montoyne, Jolley and Neuman,2 point to the increasing evidence that religious beliefs and/or spirituality help patients to cope with the fear and anxiety caused by illness.

Patients often express a need to find meaning in life, make peace with themselves, and to reconstruct beliefs or spiritual practices.

SO… WHAT IS SPIRITUALITY?

Nurgün Platin addresses a packed auditorium at the EONS-9 Congress

Therefore, I would like to start with two key questions: “Who are our patients?” and more importantly, “What are they living through?”

Our patients are facing and dealing with a culturally stigmatised illness with a reputation for being very challenging; a deep fear about death and dying; becoming vulnerable, facing disabilities, losing control and facing relationship changes.1 They are experiencing feelings such as anger, frustration, helplessness, disappointment, a sense of betrayal, isolation, hope and fear. In responding to treatment, and its side effects and complications, they have to put up with physical pain and suffering, guilt and loneliness.2 This leads them to ask big questions such as Why me? Why did my body betray me? Why do I have to suffer with this? Why am I here? Why do I have to go through all this? Am I being punished?

How do I like knowing I will die? Is there a God? Does my life have a meaning? Who or what is my highest self? What matters most... especially now?3 Trying to find answers to these questions

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eventually leads the patient to understand the disease and its treatment, and what the illness interrupts or threatens: to manage the symptoms, to learn self-control and control of the disease, to accomplish personal goals in the middle of the illness and treatment, to hope for healing and recovery and a new sense of bodily integrity, and of course to direct all efforts toward “winning” through the cure.1 From these feelings and experiences comes the patient’s “growth” and “change”.

However, for this to come, patients will need nursing care and support in various degrees and dimensions. But, if and when we approach with only “physical care” and/ or “symptom control” of the patient, we will be leaving out the important aspects of the holistic view of the person as a physical, social, psychological and spiritual being. I believe that this is where another “excellence” in care lies.

I will be focussing on the spiritual being of the holistic person and the cancer patient, and where nursing stands today and what lies ahead for the future of “excellence” in care.

Authors like Delaney, Hilbers, Hally-

Various definitions are offered for spirituality: Murray and Zentner suggest4 that spirituality is a universal phenomenon – a deeply personal, sensitive and often hidden area of human life that applies to all people, those with religious belief and those with no religious belief.

Other authors such as Hollwell, Joly and Sulmasy et al.2 define spirituality as a set of beliefs that sustain an individual through times of difficulty; the search for meaning and hope for one’s purpose of life; or the nature of one’s relationship with one’s self, others, nature or God. Complementing the religious aspect of both of these definitions, Pew indicates that the latest surveys suggest that people, especially the younger generation, are increasingly describing themselves as

Participants gather for the opening session of the EONS-9 Congress in Istanbul

EONS-9 – CONGRESS SPECIAL

“spiritual” but not “religious”, meaning that they are not affiliated with a particular faith tradition.4 Spirituality, then, is a very important, sine qua non aspect of the cancer patient, and of nursing care.

HOW CAN WE PROVIDE SPIRITUAL CARE FOR THE PATIENT? The 13th century Muslim saint and Anatolian mystic, Mevlânâ Celâleddîn-i Rûmî, said: “Anything you do every day can open into the deepest spiritual place, which is freedom.”4 (p. 326) Rûmî’s saying should give us the courage to lead the way. Indeed, even clinicians who have not been specially trained in providing spiritual care can give spiritual support by: providing a peaceful environment; actively listening to patients’ fears, worries, reflections and their spiritual story; providing physical comfort; showing respect for patients’ spiritual beliefs; helping patients to carry out their religious practice; honouring patients’ dignity; showing empathy and compassion to inspire the will to live; and providing spiritual books, videos, music and access to support groups.2 Watson3 defines the goal of caring-healing practices as honouring deeper subjective meanings and feelings about life; about living the natural inner processes and choices; discovering and honouring life, oneself, humans, nature and all living things; honouring art, beauty and aesthetics together with science and technology; and following an inner and outer vision of wholeness and healing.

Indeed, the caring-healing practice defined by Watson sounds very deep and complex, but there are very well-known modalities to be used in nurse–patient interaction or a caring-healing relationship within a caring environment. These are: reiki, aromatherapy, energy treatments, reflexology, therapeutic touch, music, relaxation techniques, praying, spiritual care, imaging, meditation and art.

All of these have their unique way of supporting healing. For example, art, painting, poetry, sculpture, dance, story telling, journaling and the things we think of as ways of “expressing” and “communicating”, all

wake our senses and our being so we can hear our inner voice.

All through this process the nurse’s goal is to assist the person, to preserve human dignity and wholeness, while exploring the meaning of their health–illness experiences to obtain harmony with self and produce self-awareness, self-growth, self-knowledge, self-reverence, self-control, self-healing and self-care processes.3 This is, in fact, a way of bringing out the inherent potential for self-healing to a higher level of consciousness, for allowing healing to occur.3 Therefore, caring–healing nursing is a way of “existence” with its own philosophy, theories, ethics, caring process, communication, healing environment, education and research.

NURSES’ PROFESSIONAL RESPONSIBILITIES However, despite the definition of spirituality and its place in patient healing, there is confusion about nurses’ professional responsibilities in this area. To clear this up we can point to many arguments, some of the strongest of which are: ●● Nurses and nursing can gain an insight related to care by a synthesis of the old and of the new philosophy of science, or post-modern science. ●● Care of the whole person, including the spirit, has always been part of nursing

From left: EONS President Erik van Muilekom, with Board members Birgitte Grube, Lena Sharp, Anita Margulies (former Board member), Daniel Kelly and Andreas Charalambous

and holistic care, but it has been marginalised in current nursing practice by a dominating biomedical mode.4 ●● If by definition a human being is a wholeness of body-mind-spirit then, morally, if spirituality is not addressed, it is a neglect and immoral;4 and ●● Spiritual care is a recognised element of quality nursing care,5 and an indicator of an increase in patient satisfaction.5 Finally, it is also important to bear in mind the following: ●● A rise in the consciousness of society and patients is increasingly guiding nursing.6 ●● Addressing spirituality will serve the growing group of spiritual but not religious young people.4 ●● Addressing spirituality will support research in spirituality and health.

In conclusion, I do hope that I have managed to present “spiritual care” as an important dimension and as an important facilitator for our nursing care agenda.

I believe that this is another area for us, as EONS, to target excellence.

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

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An open mind is the key to excellence Paz Fernández Ortega, nursing research coordinator at the Institut Català d’Oncologia, received the European Oncology Nursing Society Lifetime Achievement Award at the 9th EONS congress in Istanbul.

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urprise, surprise! There are not many things that can startle you so effectively as being given an award for lifetime achievement in the first ten minutes of a congress, even among friends. Not only does it highlight your age, but also you are usually expected to say something meaningful while your whole life flashes before your eyes.

For cancer nurse Paz Fernández Ortega, it was a life that started with being perpetually on the move.

Born in La Rioja province in Spain, she and her three siblings moved from town to town all over Spain because her parents were teachers and they changed schools frequently. These were tough days, when Spain was run with an iron fist by a dictator, and “girls did not go outside,” she recalls.

Paz yearned to fly the family nest. At 16 she applied for a scholarship and went to the United States. She was to spend 14 months with a family in New Jersey, where she finished high school. For her, this was an eye-opening experience which marked her for the rest of her life. It also injected into her indelible values that shaped her love affair with nursing. She learned the importance of embracing change, moving forward all the time, always yearning to learn new things and play new roles, and above all to be open minded.

When she got back home, she moved again, this time to Barcelona, where her destiny and her career converged. At this time she obtained a diploma in psychology, but Paz’s main focus was to qualify as a nurse, which she did in 1981. Her first job in oncology was in 1984, at the mixed public-private Plató Institute in Barcelona, and she never looked back.

She vividly remembers the first steps of a career in oncology nursing that was to span over 30 years.

“When I started, it was the most difficult and the most

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emotionally touching unit in the whole hospital. So if you were brave enough to work in oncology, then you could work anywhere. During these times, oncology units were a transition for many nurses. Having started in oncology, they would move after a year because they got burned out. But we tried to change that. We tried to do it in different ways, like a team. For the first time in my life, we worked like a team – we worked closely, doctors and nurses, as the oncology team, and we were very proud of it,” she said.

In 1989, she moved to a small institute taking up the position of head nurse for a short while. But it was at her current institution, the Institut Català d’Oncologia, one of the most famous in Barcelona, that she became more engaged in cancer nursing, starting in 1991. She worked as a homecare nurse in a pilot programme for patients with advanced cancer, initiated by the government of Catalonia, that connected patients in their home with the hospital. “We were specialist oncology nurses working closely with community nurses, who did not have the expertise of working with cancer patients.

Working in their home you realise you can do a lot of things with families and patients. As I have also been working in the hospital, I have the experience of both sides at the same time,” she recalls.

Later, in 2001, she became nursing research coordinator at her institute, which has now grown into three cancer centres and become connected with 17 regional hospitals. This involved research, not only in

“Excellence has many meanings and is a wide concept – but it is also a goal and you move in that direction”

EONS-9 – CONGRESS SPECIAL

Paz Fernández Ortega receiving her EONS Lifetime Achievement Award

from EONS President Erik van Muilekom

clinical trials but also in care. And it is here where she made her most powerful and long-lasting contribution to nursing, by promoting young nurses to get educated – to learn from and participate in research.

While Paz’s day-to-day tasks keep her immersed in the minutiae of patient care and teaching, she continuously reflects on the future of the profession.

For her, oncology has changed so much that she now predicts that continuous change will be the benchmark of a profession in constant mutation: “It is a continuous challenge. You have to learn so much, you have to learn about communications, about drugs, about new treatments, about new ways to support patients, also learn new technologies.”

Paz also sees a huge potential for nurses arising from these changes, as long as they grab with both hands the chance to keep on learning. Nurses, and students in particular, are essentially very excited to be nurses, but she says they should realise they need to move with the times, they should grow and they should learn.

From there on, Paz developed her own robust philosophy about excellence – the core theme of EONS’ congress. “Excellence has many meanings and is a wide concept – but it is also a goal and you move in that direction. You always have a chance to do it better, a chance to learn more and a chance to grow with that experience. And for me, excellence is to grow,” she says.

Paz feels very much rooted in the difficult reality of today’s Europe, with its open-ended economic crisis and its impact on health care and systems. She mentions with sadness the plight of Spanish nurses, among others, who have no or very little work and are having to emigrate. She tries not to be too pessimistic and advises them to look on the bright side: “I always tell them that they should move throughout Europe, or the whole world, and be open minded, as I did when I was 16. Now the possibilities are much better, with the internet and new technologies. My advice to my students is always “open your mind”, because you have a lot of roles, new roles – you can work as preventive nurses, in schools, in hospitals, in communities, wherever there are cancer patients.”

Although it is a celebration of a lifetime, the EONS award opens new doors and Paz feels she still has plenty to do with the younger generation. “My next step is to continue to improve research and to make cancer nursing attractive for others. We have made huge steps forward in management, in ambulatory and home care, in hospitals. But there are so many areas still to improve.”

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Mapping the unmet needs of colorectal patients Despite 471,000 people being diagnosed with colorectal cancer in Europe every year, no research has been published on the needs of these patients. At EONS-9, Geoffrey Henning, EuropaColon’s Director of Policy, held a session with nurses to tease out some key issues. Here he reports on the findings.

Report by: Geoffrey Henning

The chance to address a session at the EONS conference offered a welcome opportunity to talk to nurses about EuropaColon, which is the only organisation dedicated to colorectal cancer in Europe. I was able to report on what we have achieved in our 10-year history, on the outcome of our two patients’ conferences, the products developed by our expert patients’ advisory group, the newly developed patients’ diary and the use of the health check barometer, as well as the range of resources the colorectal community now uses as lobbying tools.

I explained about the White Paper we published to set the boundaries for the treatment and care of colorectal cancer patients across Europe, and about the importance of the declaration on the fight against colorectal cancer adopted by the European Parliament in 2010.

However, with no studies about the needs of patients with colorectal cancer, I was keen to start developing ideas that can be put in a questionnaire addressed to our patients’ organisations. The intention would be to collate them into a paper that would provide a detailed list of these needs.

It was not clear at the beginning how much would be achieved at the session.

However, they all revealed some knowledge of the disease, which came out as

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the interactive session developed and ultimately became highly productive.

The session agreed on some broad headings – Physical, Emotional and Social – under which the details of patients’ needs could be gathered, but there was not much time available to dig deeper into these needs. There were also very differing approaches between countries, with levels of intervention and support being considerably more sophisticated in some countries than in others.

DETAILED INFORMATION Under the ‘physical’ heading, a clear picture was formed of patients needing quite detailed levels of information and advice about their treatments and side-effects and about how these would affect their functioning both during and after treatment. Information about managing pain, physical changes and changes in bodily functions, along with fatigue, were all seen as important to cancer patients.

Body weight and other physical changes are issues that also need to be managed.

Overweight patients need support to reduce their weight and get enough exercise to keep it under control; anorexic patients need support to ‘bulk up’ to assist the body’s recovery. Referral to a qualified gym instructor is an option in some

countries. In others, however, no advice is given about exercise, despite the proven benefit of regular exercise, particularly for patients diagnosed with colorectal cancer, during and particularly after treatment.

Social needs were seen as an important area. Relations with family and partners was high on the agenda; sexual function and desire; dealing with disclosure; stigma associated with colorectal cancer amongst friends, colleagues and family;

EONS-9 – CONGRESS SPECIAL

With no studies about the needs of patients with colorectal cancer, I was keen to start developing ideas that can be put in a questionnaire

Geoffrey Henning received useful input during his session on colorectal cancer at EONS-9

Financial issues are often of concern to cancer patients, many of whom have to take leave from work for extended periods or are even unable to return. This affects them in so many ways, including their ability to eat suitable and healthy food during and after treatment.

A diagnosis of cancer affects all patients to the core of their being, leading to a wide range of emotional reactions. Nurses are at the centre of any patient’s treatment and the active listening they offer is often sufficient. However, some patients might need dedicated counseling. In some countries, nurses reported that referral to a range of social services is possible, in other countries not. The importance

of a contact telephone number was highlighted; and it was felt that the recently launched EuropaColon Patient Diary could be a useful resource.

Finally, no one in the audience mentioned the spiritual needs of patients.

This is a need that tends to be felt most acutely by patients nearing the end of their lives, and the omission reinforced our initial concerns, when preparing for this session, that more work is urgently needed to identify the needs of patients with metastatic colorectal cancer. Funding will be needed to make this possible.

The next steps will be to develop a range of questions for patients to answer and rate, so all the needs identified at this session can be properly evaluated. The findings will be published shortly.

Further information at www.europacolon.com

EuropaColon – facts and figures ●● Launched 10 years ago, EuropaColon is committed to preventing deaths from colorectal cancer and improving the quality of life and support for those affected by the disease, which is the third most common cancer amongst men and second most common among women worldwide, and accounts for the highest estimated rate of cancer deaths in Central and Eastern Europe.

and the importance of peer support were all recognised. Interestingly, none of the nurses reported that dedicated meet-up groups were organised in their hospitals to help patients meet other patients.

I mentioned a new social networking tool for patients being constructed by EuropaColon, which should be available

by March 2015, and requested that any nurse wishing to start a ‘meet-up group’ in their hospital to get in touch.

●● EuropaColon now has 35 partner groups in 30 countries. It brings them together to raise awareness of the disease, to lobby governments to extend screening coverage, as colorectal cancer is highly treatable if diagnosed early, and to promote greater access to the best treatment and care. ●● Since its inception, EuropaColon has launched the European Colorectal Cancer Awareness Month in March, organised two major conferences and a series of country meetings, published a White Paper “A Framework for Improving Outcomes for Patients” and set up an Expert Patient Advisory Group.

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The art of assessing pain Pain management within the cancer setting still remains a challenge. The art of assessing pain requires teamworking with the patient always at the centre of care. Many researchers have set out to unravel the complexity of pain with the aim of finding better ways to manage it.

Report by: Barry Quinn

Cancer is still perceived by many as a disease that has close associations with pain and death, despite the many advances in care. In reality, most cancer patients will experience some form of pain as they come to terms with liv­ ing with the illness. Yet pain management remains a challenge; pain is under-reported, misunderstood and often under-treated.1 Using a creative, team-based multi-modal approach (pharmacological and non-pharmacological), while placing the patient at the very heart of what we do, will enable us to move towards better outcomes and better pain management. The art of pain assessment requires moving beyond the presenting symptom to focus on the whole person and an appreciation of what the pain means to them.

social and spiritual components, which all require attention (Table 2).

Cancer-related pain rarely occurs in isolation from other symptoms and other life events; it is often accompanied by fatigue, sleep disturbance, loss of appetite, anxiety, depression and, in some cases, a sense of being isolated and alone.1 In her book, Fragile Lives, Beverley McNamara2 says that despite the positive changes in healthcare, moving away from

Table 1. Classification of pain Nociceptive

an ache or a throbbing sensation Neuropathic

EXPERIENCING PAIN The etiology of pain is often described as nociceptive, neuropathic or both, and is further classified as acute, chronic, refractory, intractable or breakthrough (Table 1). Yet none of these descriptors adequately capture the human dimension of experiencing pain, and how it can affect the person including their relationship with others, with themselves and with their world. Pain is therefore often described as having physical, psycho-

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Pain resulting from tissue damage, often described as sharp,

Pain resulting from nerve damage or a tumour putting pressure on the nerves, often described as burning, a heavy sensation or numbness

Acute

Sudden onset, may last days, hours, minutes, e.g. post-operative, oral mucositis

Chronic

More than three months’ duration, e.g. bone metastasis

Refractory

Cannot be adequately controlled despite interventions

and intractable Breakthrough

Exacerbation of pain, despite adequately controlled background pain1

EONS-9 – CONGRESS SPECIAL

Barry Quinn is Macmillan Lead Nurse for Cancer & Palliative Care at Chelsea and Westminster NHS Foundation Trust, London. He spoke at a packed congress session about his work in

The art of pain assessment requires moving beyond the presenting symptom to focus on the whole person and an appreciation of what the pain means to them

the area of pain.

an approach focused solely on disease, biomedicine still fails to account for the emotional, social, cultural and spiritual complexity of cancer.

Eric Cassell3 in his book, The Nature of Suffering and the Art of Medicine, suggests that a person’s pain is often complex and may be described as suffering when the person feels out of control, when the pain is overwhelming, when the source of the pain is unknown, when the pain is dire, or when the pain is apparently without end.

Michael Kearney4 refers to hidden and less tangible sources of pain, which require the clinical team to address the social, emotional and spiritual components of pain and distress (Figure 1). He rightly asserts that unless these components are considered and addressed, true pain management may not be achieved.

In my own study5 exploring the process of sense-making among people living with cancer and advanced disease, each person spoke of their experience of pain. While some participants spoke of the actual physical pain of cancer and the treatment(s) required, often their focus was on the more hidden aspects of pain and the impact that having cancer and undergoing treatment was having on their lives. This included the losses they experienced (a body part, fertility, certainty, confidence, choice, control), which were often hidden from public

view. Many participants spoke of sometimes feeling separated from those they loved and life itself.

One participant, Nora, a lady in her fifties, living with advanced breast cancer, spoke of her approaching death and her reluctance to leave behind the family she loved. She spoke of the distress the advanced disease and the treatments required were causing her. “The tablets and all were making me so sick… and then you suffered with constipation, everything… and I just wanted to die,

I just totally wanted to die…. I was so ill, I thought no, I can’t do this no more, that’s me finished, I am ready to go.”

Another lady, Yvonne, living with leukaemia, spoke of the many intangible losses she was facing, including being separated from her daughter and the life she loved.

“I love being a mother, basically I love my life and I think… the pain of… yes it is the pain… of cancer in a psychological way for me, there is no ending.”

Both Nora and Yvonne’s words reveal

Table 2. The meaning of pain Related to the underlying disease and/or treatment and/or co-

Physical

morbidities Psychosocial

May include anxiety, depression, loss, fear, sense of being isolated, lack of engagement

Spiritual

May include loss of meaning, belief, value, certainty, hope, desire to forgive or be forgiven, sense of abandonment, may or may not include religious beliefs

Figure 1.

Hidden and less tangible sources of pain

Pain

Adapted

What may ma be obse observed

(Kearney 1996)

SSocial

Physical

?

Emotional Spiritual

Adapted (Kearney 1996)

13

Figure 2. Examples of assessment tools

the complexity of assessing a patient’s pain and distress. For many people in this study,5 a large part of the suffering and distress arose from the personal interpretation of their pain, which was not always visible to others. As a result, many participants felt that people did not understand what they were going through, leaving them feeling ultimately alone.

The art of assessment Although there are many recognised and validated assessment tools (Figure 2), these alone will not result in a thorough assessment, unless we are willing to engage with these more hidden aspects of pain, and what this means to the individual. The key to the art of assessment lies in both clinical and human skills, requiring sensitivity and humility. This requires the team to create time, to pay attention, to be present and to see the person beyond the symptom (Table 3).

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While medicine has tended to focus on the more tangible and treatable forms of pain, there are other less tangible forms of pain which need addressing.

Abore et al.6 suggest that we must be willing to explore our patients’ losses, and perhaps more importantly, if we can tolerate it, we must be present to the depth of their anguish and despair. If we are to truly address a person’s pain, then we need to move away from working in a biomedical model that may avoid, and does not adequately address, the reality of pain and the personal suffering caused by illness.5 Research suggests a good assessment calls for a caring practitioner, “Amidst the uncertainty and the painful realities each person had to face, caring was perceived as occurring when another person carried out a simple act of kindness with a caring attitude, which required the other to be attentive.”5

Table 3. The art of assessing pain Paying attention Thinking beyond the symptom Undertaking a thorough clinical history and physical assessment Creating time Working as a team Applying an intervention and reviewing Being present

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

EONS-9 – CONGRESS SPECIAL

“Winning this EONS award made us so proud” The Novice Research Dissemination Award was initiated by the EONS Research Working Group to encourage cancer nurses who have previously not presented at an international conference, to disseminate research in which they have participated. Awardees, Joyce Roijen from Maastricht, the Netherlands and Elif Sözery from Ankara, Turkey, presented their work at EONS-9.

Introducing the awardees, Lena Sharp, EONS Board member and co-chair of the EONS Education Working Group, said: “Out of 43 award applications, the review group selected two winners, who received free registration and funding for travel and accommodation for the EONS-9 conference.

“The first awardee, Joyce Roijen, from Maastricht, the Netherlands, presented her team’s work on fertility counselling in young women with breast cancer, before adjuvant chemotherapy. (You can read more about the study in this article.)

“The second awardee, Elif Sözery, from Ankara, Turkey, presented the results from a study on resilience and burnout among oncology nurses. Data was collected using questionnaires (Resilience Scale for Adults and the Maslach Burnout Inventory) from nurses working in chemotherapy day units or oncological wards. The results showed high risk for burnout among the nurses in the study.

“After the presentations, the two awardees answered questions and received feedback from the conference audience.

Joyce was asked to describe the nurses’ role in the infertility team and Elif was encouraged to go ahead and publish her results.”

THE OPPORTUNITY TO PRESENT Joyce Roijen told EONS Magazine: EONS-9, in Istanbul, was an inspiring and well-organised conference. Nurses from different countries were represented, which gave me a sense of pride. I was proud to

be a nurse and proud to see that we work with everyone to develop our profession to a higher level. In addition to providing patient care, there was also a lot of attention on quality improvement through doing nursing research. I was proud to have the opportunity to present the data on our survey at a large conference like EONS. My presentation Young women with breast cancer are a particular, but very important, group. In my work as a nurse practitioner training at the University Medical Centre, Maastricht, the Netherlands, I focus on breast cancer, specialising in the specific problems surrounding young woman with breast cancer.

Adjuvant chemotherapy in young patients with breast cancer can cause permanent infertility. Loss of fertility after breast cancer treatment negatively impacts on the quality of life of young patients. The long-term survival after breast cancer is getting better, and therefore there is more and more attention Joyce Roijen

given to the quality of life in the long term.

How is the quality of life of the young women? And, is there a difference between women who are counselled about fertility problems and women who are not? Investigating these questions, my colleagues and I started our research, Fertility counseling in young women with breast cancer: a cross-sectional study.

Sixty-five women, who were diagnosed with early-stage breast cancer between the ages of 18 and 42 years, completed several quality of life questionnaires. Participants were asked if they received counselling by a fertility specialist and if they underwent fertility preservation treatment. In conclusion, we can say that fertility counselling prior to breast cancer treatment has a positive influence on quality of life in young women with breast cancer. We recommend that women wanting to have children are referred to a dedicated medical oncologist and fertility specialist for intensive counselling.

You could ask yourself why the conclusion that fertility preservation is related to the desire to have children is so special. It seems obvious, but it was not when we started this project four years ago. In recent years, fertility counselling has received increased attention, which is a major step forward.

Special thanks to professor Tjan-Heijnen and the rest of the team who worked with us enthusiastically on this project.

For me and my colleague, Doris van Abbema, this was our first study. It was a big surprise to hear our team’s abstract was selected for oral presentation and we had won an award.

This has made us very proud!

15

Challenges of living with lymphoedema Successful management of lymphoedema varies according to patient education but also attitude to treatment and adjusting every day life. Here, Eunice Jeffs, NIHR Clinical Doctoral Research Fellow at the Florence Nightingale Faculty of Nursing & Midwifery, King’s College London, UK, writes about her recent study providing new insights into how to live well with lymphoedema. The research was funded by an EONS Major Research Grant.

Breast cancer-related lymphoedema (BCRL) of the arm affects at least 20% of women following breast cancer treatment1 causing significant physical and psychosocial problems.2-4 Lifelong self-management is essential,5-6 although reported adherence to recommended treatment varies greatly.7-8 The aims of the study were (i) to identify factors affecting ability to successfully undertake recommended lymphoedema self-care, and (ii) to determine how individuals self-monitor lymphoedema symptoms.

Twenty-one women, aged 33-82 years, were interviewed between February and November 2013 using a Grounded Theory approach.9 The women all undertook some lymphoedema self-management – two were considered by their lymphoedema practitioner to be non-adherent to recommended lymphoedema self-care, and most varied their treatment somewhat. Their accounts highlight seven factors influencing their ability to carry out lymphoedema self-care.

ROUTINE Lack of routine is probably the main reason for not doing regular self-management.

Routine helps normalise life with lymphoedema, removes the need to think about lymphoedema or treatment, and reduces the likelihood of forgetting to do self-treatment. Many women believe such a routine is crucial for learning to live with lymphoedema and regaining a normal life.

“Before I get dressed or anything else, I do the exercise and it’s just part of my morning

18

routine. And I think it’s that routine-ness of it, you stop thinking about it, you just do it. And I think that makes life a lot easier” (retired teacher).

Eunice Jeffs receiving her Major Research Grant award at EONS-9

Recognising treatment outcomes Women may view similar treatment outcomes very differently: unchanged symptoms may be viewed as successful symptom control, motivating continued self-care, or lack of progress which discourages treatment. Some women only undertake self-management when doing activities likely to aggravate swelling, e.g. wearing hosiery when shopping or doing certain household chores.

Owning the treatment The women link taking ownership of treatment with successful management of lymphoedema. Negative attitudes are linked with difficulty undertaking lymphoedema self-care. “[It helps] that I’ve made myself realise that I’ve got a choice: I either wear it [hosiery] and my arm will hopefully gradually go down even more, or I don’t wear it and I end up not being able to do anything or I’ve damaged my arm because I get cellulitis” (retired teaching assistant).

Knowledge and understanding Information is highly valued, particularly treatment tips and advice. However, women place great importance on knowl-

in Istanbul, Turkey.

EONS-9 – CONGRESS SPECIAL

edge that enhances a positive attitude towards self-care, e.g. learning the value of treatment, range of symptom fluctuation, how to adjust self-care to control symptoms.

Problem solving The women’s practical solutions to the challenges of living with lymphoedema emphasise normalising life and reducing treatment burden, e.g. adjusting workspace, disguising lymphoedema/hosiery with clothes/colours, creating personal routines, combining self-management with other daily routine or tasks.

Time required Busy lives and conflicting priorities create challenges for lymphoedema self-management, particularly for women with children or in full-time employment. Women often do only the quickest/easiest or most beneficial treatment elements, e.g. wearing hosiery, but no time for exercises.

Time is needed to learn to live with lymphoedema, to fully accept necessary self-management activities. Some women regain a normal life, with self-management integral to everyday life; others never achieve this level of acceptance.

Aesthetics of hosiery The visibility of hosiery, particularly hand garments, is an unintended treatment consequence. The women are frustrated that hosiery publicly reveals their lymphoedema and breast cancer diagnosis, and tired of answering questions about hosiery and explaining lymphoedema.

“Well no-one wants to be different, do they? And that’s how I feel sometimes.

Obviously I am, and when you’ve got this [sleeve/glove] on you can see that. Whereas when I haven’t got it on, people don’t say to me, ‘Oh, what’s the matter with your arm? It looks a bit swollen?’” (stay-at-home mum).

Deciding treatment outcomes Four aspects of lymphoedema are self-monitored: size, appearance (visible anatomical landmarks, muscle definition), tissue texture (hard, firm, soft), and internal sensations (ache, heaviness). Similar criteria are used by clinicians.6,10

Above: Women are often reluctant to wear hosiery, particularly hand garments, publicly. Right: Breast cancer-related lymphoedema of the arm.

Discussion The study findings add to the growing body of knowledge regarding the multi-faceted challenges of living with lymphoedema,7,11-14 and provide some new insights.

However, the views of UK women undertaking self-management are not necessarily relevant to other groups, e.g. non-adherent to treatment, or other countries. The finding that hosiery makes lymphoedema publicly visible, thus influencing decisions to wear hosiery, is important given that many women now present with mild lymphoedema.15,16 Loss of pre-lymphoedema normality may be inevitable, however our findings suggest some women can create a new ‘normal’ life not controlled by lymphoedema or treatment demands.

The box on the right highlights the implications for practice, particularly the role of education and support by practitioners and expert patients. Further research is required to explore the wider relevance of these findings and identify strategies for living well with lymphoedema.

Implications for practice Patient education ●● Equip and support the transition from novice to expert patient ●● How to live well with lymphoedema ●● How to monitor own swelling ●● Significance of symptom changes ●● How to appropriately adjust self-management ●● Preparation for discharge Transparent treatment pathways ●● Explicit indicators for discharge from lymphoedema service ●● Provide clearly stated and measurable treatment goals

This study was undertaken whilst employed as Macmillan Lymphoedema Specialist Practitioner at Guy’s Hospital, London, UK. Research funded by 2011 EONS Major Research Grant, and supported by Guy’s & St

Support ●● Encourage/develop expert buddy system

Thomas’ NHS Foundation Trust. Thanks go to the 21

Further research

women who told their stories and the staff at the

●● Process of transition/learning to

three lymphoedema clinics.

A more detailed paper will shortly be published in the European Journal of Oncology Nursing at www.journals. elsevier.com/european-journal-of-oncology-nursing/ Details of the references cited in this article can be

live well with lymphoedema ●● Educational needs: timing and focus of education ●● Role of the expert buddy system

accessed at www.cancernurse.eu/magazine

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Cancer medication adherence: a cultural perspective As new oral anti-tumour agents are developed, doctors, policy makers, and healthcare managers are focusing on strategies to optimise adherence to get the best possible outcomes. At a discussion session at EONS-9, Sultan Kav, Professor at Baskent University, Faculty of Health Sciences Department of Nursing, Ankara, Turkey, explored the challenges that non-adherence poses to patient management.

CORBIS

T

oday one in four drugs used in cancer treatment can be administered orally. Almost half of the targeted molecules approved for the treatment of cancer in the European Union since the year 2000 are exclusively available as oral formulations (Table 1). And more than three-quarters being developed today are oral antitumour agents.

Development of oral cancer agents has changed paradigms of both treatment and patient education.

Self-administration of oral cancer agents transfers responsibility for administration and monitoring from a team of healthcare professionals to the patient or caregiver, and may diminish opportunities to quickly identify and intervene when toxicity or side effects become apparent. Adherence to

20

prescriptions of oral anti-cancer agents is essential for optimal outcomes; however, studies focused on oral chemotherapy showed adherence levels ranging between 20% and 100%.

Adherence means acting in accordance with recommendations made by healthcare professionals to which the patient has agreed after receiving detailed information. The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) has defined adherence as synonymous with compliance, i.e. ‘‘the degree or extent of conformity to the recommendations about day-to-day treatment by the provider with respect to the timing, dosage, and frequency’’ for ‘‘the duration of time from the initiation of the medication to discontinuation of therapy.’’ Adherence is critical to successful treatment outcomes.

EONS-9 – CONGRESS SPECIAL

Medication adherence is complex and involves patient, physician, and process components. Despite its importance, adherence is an individual patient behaviour that is difficult to objectively measure, monitor and improve. It may be the greatest barrier to effective use of new oral agents, if cancer care teams fail to consider this potential, serious obstacle.

Spoelstra et al.2 examined the issues related to over-adherence to oral agents that were noted during a trial conducted by the authors comparing an automated voice system to strategies to reduce symptom severity and improve adherence. For the study, over-adherence was defined as taking more than the prescribed oral oncolytic medication in any one-week time period during the study. Thirty-three of the 100 patients in this sample were non-adherent to their oral oncolytic. Of these 33 patients, 20 were over-adherent and the remaining 13 were under-adherent. Findings indicated that 42% of the patients were non-adherent, with no difference in adherence rates found among groups. Missed doses increased with regimen complexity. Higher adherence rates also were related to lower levels of symptom severity.

Factors associated with medication non-adherence Problems with medication adherence include patient factors, disease factors and system factors.

Patient factors can include age, education, income, cognition, attitude, beliefs, expectations, perception of illness, the environment, or health literacy.

Influencing disease factors can include several comorbid conditions, severity of disease, severity of outcome, and response to treatment. System factors may include the organisational structure of the healthcare system, the relationship with provider, and distance to health services.

In a study from Greece (n=99), Saratsiotou et al.3 reported that unintended non-adherence to therapy was reported by 19 patients. The most important factor correlating with unintended non-adherence was the patient’s belief regarding treatment effectiveness.

How to assess non-adherence?

Multiple measurement tools are available to assist healthcare providers in assessing non-adherence: ●● Learning about barriers – ASK-20 is a patient survey that helps to identify 20 barriers to medication adherence for a variety of chronic diseases.4 ●● MASCC Oral Agent Teaching Tool (MOATT).5 ●● Motivational interviewing.6

Table 1 – Oral anticancer drugs approved by EMEA since 20001 Drug

Date

Indications

Capecitabine

Feb 2001

Colorectal cancer, gastric cancer, breast cancer

Dasatinib

Nov 2006

CML, ALL, lymphoid blast chronic myeloid leukemia

Erlotinib

Sep 2005

Non-small-cell lung cancer, pancreatic cancer

Fludarabine

July 2002

B-cell chronic lymphocytic leukemia

Imatinib

Nov 2001

AML, ALL, chronic eosinophilic leukemia, malignant GI stromal tumors, dermatofibrosarcoma protuberans

Lapatinib

June 2008

Breast cancer

Nilotinib

Nov 2007

Chronic myelogenous leukemia

Sorafenib

July 2006

Hepatocellular carcinoma, renal cell carcinoma

Sunitinib

July 2006

Malignant GI stromal tumor, renal cell ca

Thalidomide

Apr 2008

Multiple myeloma

Vinorelbine

Apr 2004

Breast cancer, lung cancer

Topotecan

Apr 2008

Ovarian cancer, lung cancer, cervix cancer

Types of non-adherence Resistance to initiate therapy Skipped doses Medication discontinuation Dose self-adjustment Over-adherence Inappropriate drug administration

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The MOATT provides a structured format to ensure all key areas of patient assessment and teaching are addressed. It allows for individualisation of teaching and uses evidence-based tenets in patient education.

The MOATT has been recognised as a useful tool – cited in articles, used in research and quality improvement projects, and as an ‘easy assist’ in patient education. The MOATT User Guide provides background for patient education in general, plus a framework and examples of its usefulness in clinical and research settings.

This user guide further includes: a patient education tutorial, background of the development of the MOATT, four case studies from four countries showing clinical application, two examples from two countries of its use in research, a copy of the tool, sample adapted education templates courtesy of Dana Farber in Boston; and also some samples of abstracts and posters about the MOATT (www.mascc.org).

Studies have shown that there are always a number of cancer patients who might need specific interventions to ensure adherence. Providers should ensure that patients feel as if they are part of the cancer care team. It has been recommended to provide culturally appropriate patient-centred care as a way to foster patients’ involvement in their care. Sociocultural values are also linked to cancer outcomes through beliefs, attitudes, and behaviors related to provider–patient relationships and interactions, and adherence to medical treatments.

Although the primary responsibility for adherence to oral anti-cancer treatments lies with the patient, the oncology healthcare team can have a significant impact on adherence to oral therapies. Since numerous factors contribute to patient medication adherence, it is unlikely that one single approach will be optimally effective. Instead, providers should use a multidisciplinary approach to promote medication adherence in their cancer patients. For example, collaboration among pharmacists, oncology nurses and physicians has been shown to improve patient adherence to oral chemotherapy.

Nurses are uniquely positioned within the oncology medical team to educate patients about the goals of treatment, how to take their medication and how to manage side effects, should they occur.

Patients should take home information in the form of diaries, guidelines for dose reduction in case of adverse events, and side-effect support kits. This will help them to self-manage their treatment and may give them a greater sense of personal responsibility.

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

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Patient-related factors associated with medication non-adherence

The MOATT Sections and Contents Sections I: Key Assessment Questions To assess the patient’s knowledge of the treatment plan, current medications, and ability to obtain and take an oral cancer agent II: Patient Education General patient teaching instructions applicable to all oral cancer agents (storage, handling, disposal, system to remember, actions if problems) III: Drug Specific information Used to provide drug-specific information (dose & schedule, side effects, and potential interactions) IV: Evaluate Questions that may be asked to ascertain understanding of the information provided An additional page is added as a hand-out of drug-specific Information that can be provided to the patient in the absence of any other prepared information

EONS-9 – CONGRESS SPECIAL

Two approaches to screening for distress Integrated screening helps identify distress early, which makes it easier to manage effectively. A workshop at EONS-9 on distress management, chaired

by Greta Cummings of Canada, featured presentations from Ankie Krol of the Netherlands and Deborah McLeod of Canada.

Canada has a robust track record for several models of care for integrating screening in clinical practice. Here Deborah McLeod, from the Canadian Association of Psychosocial Oncology, reviews a new project that encourages the integration of distress initiatives into oncology nursing practice: Recommendations to routinely screen for and treat cancer-related distress have been published by several national organisations around the world.

Since 2007, a number of cancer centres in Canada have been implementing screening for distress1 using the Canadian Common Data Set,2 including the Edmonton Symptom Assessment System (ESAS)3 and the Canadian Problem Checklist. Models of care for integrating screening in clinical practice should contain a number of key components including: simple, validated patient-reported measures; training oncology staff to recognise, explore, and deal with distress; and specialist psycho-oncology services with referral pathways. However, implementation of screening followed by appropriate responses in routine practice remains a challenge.

In Canada, a number of initiatives have been undertaken to improve the situation, including the development of several clinical practice guidelines (CPGs) to guide oncology health care professionals, such as nurses, in distress management. In order for these CPGs to make a difference to patient outcomes, ways to incorporate the recommendations into practice need to be identified. One response is the development of a multi-site, knowledge translation project designed to create a layered response to practice change.

Phase I of the project was designed to assess barriers and enablers to implementing the target CPGs for fatigue, pain, anxiety and depression. Participant

sites include tertiary, community and rural settings, in four provinces in Canada. We used the Theoretical Domains Framework (TDF)4,5, which incorporates constructs from across behaviour change theories into one framework with 14 domains, to guide the qualitative data collection. Focus groups and interviews were conducted with nurses, other health professionals, decision makers and leaders, physicians and patients/family members. The TDF was then used to guide the analysis of barriers and enablers, ensuring a comprehensive assessment of factors that may support or prevent practice change. This provides a foundation to map evidence-based interventions to the key barriers to integrating the CPGs in practice.

We identified that six of the 14 domains were most problematic for nurses, and one of these could

The two speakers.

Ankie Krol (left) of the Netherlands and Deborah McLeod of Canada discuss their different approaches

23

also be an enabler. The domains were: knowledge, skill, beliefs about consequences, professional/ social role and identity, social influences, and environmental contact/resources. These findings will inform phase II of the study, in which specific interventions will be designed to address each barrier. One intervention that has already been developed and piloted to address the knowledge/ skill domains is an Interprofessional Psychosocial Oncology Distance Education course (IPODE; www. ipode.ca).6 The one-year Therapeutic Practices for Distress Management course consists of four four-

week modules, weekly web-based seminars and eight reflective practice/case consultation web sessions.

We anticipate recruiting 120 nurse participants in the project over the next two years.

Health system improvement is complex and sometimes not guided by theory or best evidence.

Using a framework such as the TDF to theoretically derive interventions shows promise in ensuring the interventions match the need, thereby leading to more reasoned approaches to practice change design.

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

The Distress Thermometer Ankie Krol works as a nurse practitioner at the gynaecology out-patient clinic in Meander Medical Centre Hospital in Amersfoort, in the Netherlands. She contributed to the development of the directive “Detect psychosocial care”, and working with the Distress Thermometer is part of her daily routine. After the workshop, EONS Magazine asked her about her work.

You stress the importance of how we encourage patients to tell us how they are really feeling. What are your reservations about the question “How are you”?

The question “How are you?” we ask our patients very often, most of the time out of habit or because it is a nice way to start the conversation. Many patients answer accordingly with “fine”. So do we really know how the patient is feeling on a physical, psychological, social and emotional level?

What are the basic elements of the Distress Thermometer?

The Distress Thermometer is a science-based instrument, which should be used at different times during the various stages of the illness. It has three elements: First, the thermometer itself, with a score of 0 to 10. A score of zero means no complaints and 10 means the complaints are extreme.

The second element is the problem questionnaire. The question “How are you?” is asked in five areas of wellbeing: physical, practical, social, psychological and spiritual.

The third part is the question, “Would you like to talk with a professional?” The patient can answer with a ‘yes’, ‘no’, or ‘maybe’. It seems like a trivial question but it is important!

The outcome of the completed Distress Thermometer is discussed. Whenever the score on the thermometer is a five or higher, we discuss whether further referral is necessary.

What is the main benefit of the Distress Thermometer?

It gives structure to the conversation for the patient as well as

24

the nurse. Besides that, it gives structured attention to ways of discussing psychosocial care. It is a quick way to screen whether there are any problems and, if so, in which area.

Tell us about the research that’s been done around the Distress Thermometer?

In the Netherlands, research has been done at the Comprehensive Cancer Care Centre. The aim of the study was to gain an insight into the implementation and use of the Distress Thermometer tool under the directive “Detect psychosocial care”. Many hospitals are still at the stage of implementation. The conclusion provides strategies for implanting the tool, as well as input for the revision of the directive in the future.

What arguments do you encounter against the use of the Distress Thermometer?

Both the patient and the nurse can have arguments for not using it. Patients’ arguments for not using the Distress Thermometer are that it is time consuming or they feel uncomfortable about sharing the way they feel with you – “It is not your business” or “I don’t want to talk about it.”

Arguments against it from the nurse are the feeling, “I do not need this tool,” or “I don’t want to talk about sex or other difficult subjects.”

However, motivators for implementing it are the presence of specialised nurses or nurse practitioners who support the use of the tool.

How do you see the future for the Distress Thermometer?

More research is needed to determine the possible positive effects of using it for the patient, the professional and the organisation. Nurses in the Netherlands are often too focused on implementation of the Distress Thermometer alone and forget that it should be just one part of a structured distress management programme.

EONS-9 – CONGRESS SPECIAL

EBMT and EONS – Sharing challenges and improving care The European Society for Blood and Marrow Transplantation (EBMT) and EONS have recently committed to working together. At EONS-9, a joint session, featuring EBMT Past Presidents Arno Mank and Elisabeth Wallhult, with EONS Board member Patrick Crombez, looked at chemo-induced neutropenia.

Arno Mank

NURSING EVIDENCE AND CONTROVERSIES IN INFECTION PREVENTION

Arno Mank As members of multidisciplinary teams, nurses are well placed to play a key role in the management of bacterial infection. The progress in reducing the risks is due to various developments in treatment but also, most importantly, the search for controversies and the use of evidence-based practice.

Hematological malignancies make 7% of all the new diagnosed cancers in Europe.

They can be identified by the primary hematologic component that is affected – red blood counts, white blood counts, platelets, or the coagulation system. The most common diagnoses are leukemia, lymphoma and multiple

myeloma. Over the last 30 years, treatment has undergone major changes but chemotherapy is still the basic treatment, often followed by autologous or even allogeneic stem cell transplantation (SCT).

Symptoms vary between the different diagnoses but fever, weight loss, fatigue and pain and infections because of the neutropenia are dominant. It was believed that strict protective isolation, CVC lines, the ingestion of a low bacterial diet and keeping patients hospitalised during the complete neutropaenic period would decrease the risk of bacterial infection. However, this seems to be based on routines, ‘rituals’ adopted by healthcare professionals, and lacks empirical foundation. Important change came with the fact that infection normally came from the patient themselves.

Controversies in nursing care Since the 1970s, the overall mortality rate from bacterial infections has decreased from 21% to 7%. This is a result of several developments, such as the use of colony-stimulating factors to decrease the duration of neutropenia, the widespread use of fluoroquinolones as selective oral antimicrobial prophylaxis to reduce bacterial colonisation, the use of antifungal prophylaxis to reduce the risk of invasive fungal infections and empiric treatment with broad spectrum antibiotics. This brought about many variations and contro-

versies in nursing care in and outside hospitals. As well as these changes, patients, governments and insurance companies demanded clear answers and accountability for nurses’ actions.

Evidence-based practice As the founder of modern nursing, Florence Nightingale (1820-1910) already mentioned observation of the sick in her famous Notes on Nursing stressing “What you want are facts not opinions”. As part of the multidisciplinary hematology team, hematologists and nurses are ideally positioned to play a key role in the identification, management, and (ideally) prevention of hematologic infections caused by high dose chemotherapy. Nowadays there are already several examples in combined medical and nursing research in patients with high dose treatment, describing how the context from traditional handlings has turned into evidence-based practice.

Evidence-based practice (EBP) is the conscientious, explicit and judicious use of current best practice in making decisions about the care of the individual patient. Thus it is essential for this vulnerable group of patients that we search for controversies in our oncological care, develop evidence-based evidence and finally useful guidelines, to improve care for patients by promoting interventions of proven benefit, and by discouraging

25

A NEW PARTNERSHIP EONS and the European Society for Blood Marrow Transplant Nurses Group (EBMT NG) have recently signed up to work together. We asked EBMT NG Past-President, Elisabeth Wallhult, of the Section of Haematology and Coagulation, Sahlgrenska University Hospital, Gothenburg, Sweden, to tell us about the work of EBMT and the plans for new cooperation with EONS.

Rituals: In the past, a priest was also doctor and nurse. Later, these professions are split up. Some healthcare practices however are still based on routines, or rituals, lacking empirical foundation.

ineffective interventions. A good initiative for the future will be to update the EONS-EBMT Nurses Group collaborative TITAN learning programme, as this is about neutropenia, anemia and thrombocytopenia, and to implement the latest EBP evidence.

Providing highly complex care and at the same time minimising the risk of life-threatening adverse events, especially infections, is crucial for patients treated with high dose chemotherapy. Nurses play a key role in ensuring the proper and safe administration of these therapies and they are often the first to identify signs of side effects.

Future research opportunities in the field of supportive care include prevention of infections, and should be done. Hematology and oncology nurses can and must play an important role and should take more of a lead in the use of the EBP paradigm.

26

Please tell us about the collaboration between EBMT/EONS The first shared project will be to update the TITAN programme, which is about thrombocytopenia, anaemia and neutropenia, common complications of many cancer treatments. We believe the update will result in a useful tool for oncology/haematology nurses.

A large number of cancer patients receive chemotherapy, which is also part of the haematopoietic stem cell transplant (SCT), a standard therapy for many patients with haematological cancers. Many aspects of patient care are similar regardless of cancer type and treatment modality. EBMT NG and EONS therefore recognise the advantages of collaboration in nursing issues where we share the same challenges and where our joint efforts could improve the care of patients.

As a first step to confirm our partnership there was a joint EBMT/EONS session at the EONS-9 Congress.

How is EBMT organised? – What are its main structures?

EBMT is a centre-based organisation with 563 centres in 57 countries, within and outside the European continent. We have 4300 centre members of which 600 are nurses. Every year approximately 35,000 SCTs are performed and reported in the EBMT registry.

The EBMT Annual Meeting is the main event of the society with parallel programmes for nurses, physicians, data managers, quality managers, and cell processing staff, in addition to a number Elisabeth Wallhult of multi-professional joint sessions.

The EBMT NG is of particular interest to us – how does it work?

The EBMT NG has its own board and its president is Aleksandra Babic. There is a Scientific Committee for the nurses programmme in the Annual Meeting. The Research Committee is undertaking studies independently and in collaboration with the Complications and Quality of Life Working Party, e.g. sexuality among SCT survivors and their partners. They also support colleagues in various research projects and give input to the Prospective Clinical Trials Committee, all with the ambition to publish results and establish evidence-based practice. The Paediatric Committee provides a network for nurses in paediatric oncology and SCT, and arrange bi-annual meetings and courses. The EBMT Newsletter has a nursing section with the Communication and Networking Committee responsible for its content as well as for the nursing part of the EBMT website, www.ebmt.org. Educational activities are coordinated by the Educational Committee with an aim to make haematology/SCT nursing education accessible to nurses worldwide. Educational materials such as booklets, learning programmes and videos are available on the EBMT website and initiatives like International Study Days and Master Classes are offered in different countries within and outside Europe.

How does the Nurses Group fit into the activities and overall structure of EBMT? The activities of EBMT are focussed on science, education and research where the registry is a unique source of data. In addition to the Annual Meeting, there are several other educational events and publishing of a handbook for stem cell transplantation.

For many of the events and projects the EBMT NG collaborates with National Nurses Groups/Regional Forums. They are independent groups within a country or region for nurses in haematology and SCT care. Other collaborators are pharmaceutical companies, patient associations and professional organisations like Multinational Association of Supportive Care in Cancer (MASCC).

The EBMT NG is now very happy to also have a formal collaboration with EONS.

EONS-9 – CONGRESS SPECIAL

GENERAL MANAGEMENT OF NEUTROPENIC PATIENTS

nutritional status, e.g. low albumin, open wounds or active tissue infection and co-morbidities. Cancer-related risk factors comprise bone marrow involvement with tumour, advanced cancer and elevated lactate dehydrogenase.

Patrick Crombez Cancer and cancer treatment, whether chemotherapy or radiation therapy, can cause neutropenia in several ways. Patients with neutropenia are at an increased risk of developing serious infections. Cancer nurses play a major role in its prevention and management.

Neutropenia is the most common doselimiting toxicity of cancer chemotherapy, and complications from chemotherapy-induced neutropenia (CIN) can cause significant morbidity and mortality. In fact, Given and Sherwood1 identified CIN as a nursing-sensitive patient outcome symptom. Expert nursing assessment, intervention, education, and evaluation facilitate patient management of CIN.

Prevention and management The primary focus of oncology nurses should be the prevention of infection related to neutropenia rather than management of neutropenia.

Commonly held principles of neutropenia management, e.g. use of the neutropePatrick Crombez nia diet, should be examined carefully for supportive evidence. a predictive model for patient evaluation at Based on a review of the literature the time of presentation with FN in which following classification of cost-effective the outcome measure was either uncomplinursing interventions for the prevention cated recovery or development of serious and management of FN, and depending complications.2 Seven independent risk on different levels of evidence, the folWhat is neutropenia? factors were identified using a multiple lowing actions can be taken:3 ●● Low evidence: wearing mask by the health Neutropenia is defined as a reduction in regression model. Each of these factors was circulating neutrophils. Table 1 lists the assigned a numeric weight, and each patient care provider, low bacterial food and operational definitions of neutropenia evaluated would score from 0 to 26, with a dressing of tunneled central catheters. ●● Moderate evidence: systematic use of and febrile neutropenia (FN). higher score (> 21) predictive of an uncomUsually, the white blood cell nadir from plicated outcome and a lower score (< 21) HEPA-filtered air for prevention of Aspercyclic combination chemotherapies is predictive of a complicated course of FN. gillus infection and laminar air flow rooms. ●● High Evidence: frequent oral care, venous 7–14 days from the chemotherapy adminIt is crucial that nurses undertake a comistration. The most significant outcome of prehensive assessment in order to deteraccess devices not placed during neutroCIN in patients with cancer is death, as a mine the whole risk profile of the patient penia, antimicrobial prophylaxis if neuresult of infection and sepsis. developing febrile neutropenia. This tropenia < 500/mm3 is expected during should include treatment-related risk fac> than seven days, construction barriRisk assessment tors such as the previous history of severe ers, avoiding fresh flowers or plants and The importance of risk models in deterneutropenia with similar chemotherapy, prompt action when neutropenic fever mining patients, who are at high or low type of chemotherapy, planned relative (administration of antibiotics < 2h). risk of developing neutropenic complicadose intensity greater than 80%, pre-existOncology nurses play a critical role in tions, has been expanded in the current ing neutropenia, extensive prior chemoclinical practice, research, and education era of outpatient cancer therapy and the therapy and concurrent or prior radiation with regard to the prevention and manageuse of growth factor support. therapy to marrow-containing bone. ment of CIN and they should endeavour The Multinational Association of SupPatient-related risk factors include older to maintain their understanding of the eviportive Care in Cancer (MASCC) developed age, gender, poor performance status, poor dence and guidelines. In doing so, oncology nurses can be confident that clinical evidence is driving their Table 1. National Cancer Institute common toxicity criteria: neutropenia and febrile neutropenia decision-making processes to ensure quality cancer care and Grade 1 2 3 4 5 provide patients with the best opportunity for favorable longNeutropenia <1500/mm3 < 1500 – < 1000– < 500/mm3 Death term outcomes.

3 3 1000/mm 500/mm Febrile neutropenia

Present

Life-threatening consequences, e.g. septic shock, hypotension acidosis

Death

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

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Overcoming medication errors in cancer care The safety of cancer patients taking anti-cancer drugs is still difficult to fully secure due to their toxicity. Errors can happen While there is no single solution to this complex problem, involving the patient is key.

Report by: Lena Sharp

A

ccording to the World Health Organization (WHO), approximately 10% of all patients are harmed by the healthcare system in some way. Many of these errors are related to medication. Cytotoxic agents are among the drugs most frequently involved in medication errors, and these errors can have catastrophic consequences, due to the high toxicity and narrow therapeutic index. Cancer patients are particularly vulnerable due to the seriousness of the disease, co-morbidities and often age-related frailty.

The chemotherapy process is complex. Nurses, physicians and pharmacists often need to keep

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TORKEL EKQVIST FOTOGRUPPEN SĂ&#x2013;S

at every stage of the therapy.

track of hundreds of different regimens and adjust them to each specific patient. Errors can occur during prescription, preparation, administration and monitoring/follow-up. With the growing number of oral cancer therapies, many patients can control their medications themselves. This can give great benefits, but also poses an increased risk for non-adherence. Patient involvement has been identified as one of the key components in avoiding medication errors in cancer care.

Many errors result from poor communication and coordination within cancer care teams. All of these circumstances call for standardised and

Nurses have a key role in identifying safety risks, to prevent and reduce the risk of medication errors

EONS-9 – CONGRESS SPECIAL

safer procedures in order to reduce the risk for unnecessary error. Nurses have a key role in identifying safety risks, to prevent and reduce the risk of medication errors.

Table 1 – Top 10 cytotoxic drug errors

NO MAGIC BULLETS Evaluating the effect of interventions to improve patient safety is difficult. Many errors go unreported, particularly risks and close-calls. Several interventions are suggested in research (standardised protocols, electronic prescriptions, barcodes, checklists, communication tools, no-interruption zones, electronic reminders and patient involvement). It needs to be stated however, that there are no magic bullets for improving medication safety in cancer care. No single strategy will provide the desired safety standard. This complex problem requires several different actions.

At Karolinska University Hospital, Department of Oncology, in Stockholm, Sweden, all errors reported during 2012 were analysed in detail. The results showed that 24% of the reported errors were related to medication and 62% of those (n=178) involved cytotoxic drugs (or premedication to cytotoxic drugs).

The 10 most frequent types of cytotoxic-related errors are presented in Table 1.

“Evaluating the effect of interventions to improve patient safety is difficult. Many errors go unreported, particularly risks and close-calls.”

Box 1 – Actions to improve patient safety related to cytotoxic use at the Department of Oncology, Karolinska University Hospital, Stockholm, Sweden ●● Development and implementation of a standardised protocol for the delivery of cytotoxic drugs (based on the ASCO/ONS guidelines 1, aiming to reduce the risks identified in the root-cause analyses) ●● Implementation of automatic medication dispensers and finalising the process of implementation of electronic prescription software ●● Implementation of quiet zones for medication and preparation of cytotoxic drugs ●● Development and implementation of a patient involvement programme ●● A support programme including step-by-step protocol for staff and management for when a serious adverse event reached a patient ●● On-going studies on patient involvement during in-patient care

A root-cause analysis was also undertaken, which identified 31 risk areas classified as both serious and likely to happen. Several actions were taken to improve patient safety related to cytotoxic drug use at the Department of Oncology (Box 1).

A formal evaluation of these actions is on-going, but a number of preliminary results are already available.

The number of reported errors has increased among all professional groups, indicating an increased awareness of patient safety issues.

A slight improvement in patient safety culture can also be detected (Hospital Survey on Patient Safety Culture), as well as a greater improvement in the proportion of correct prescriptions. The principle challenge in this work is to get all staff to follow the new protocols.

Lena Sharp is Head of Cancer Care Improvement, at the Regional Cancer Centre, Stockholm-Gotland Details of the references cited in this article can be accessed at www.cancernurse.eu/magazine

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‘Gems of information’ The poster exhibition at EONS-9 was again very impressive, and attracted a lot of interest. Three winners were selected from a very strong field.

EONS Magazine took the opportunity to ask them to explain their work.

ÇIGDEM SARI Communication with children is one of the most important issues in paediatric nursing. The non-verbal communication messages of children are particularly important. Evaluation of these messages provides us with better understanding.

Drawing is the easiest method for children to express feelings and thoughts. In this study, we wanted to understand the feelings and thoughts of children with cancer who were in hospital. Our goal was to contribute to more efficient nursing care for them. Therefore, we used drawing and shared storytelling techniques in their own language in our study.

The fact that this study was awarded the Best Poster Award at EONS-9 Congress will help to enable and extend the use of this method by other paediatric nurses. In addition, getting this award at an international congress was a great source of pleasure and pride for the researchers.

Thanks to everyone who contributed at the congress and the children who took part in this study.

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HIROKO KOMATSU On behalf of my research team, I was deeply honoured and grateful to accept the Best Poster Award from the European Oncology Nursing Society. It was a great surprise while attending the EONS Congress for the first time. I would like to attribute this honour to the dedicated Japanese nurses who work hard for the betterment of patient care each day. On account of nurses’ professional identity coming under threat in the context of a rapidly changing multidisciplinary environment, we were under pressure to explicitly address the uniqueness and significance of nursing. Our study stemmed from this critical situation.

The findings of the study elucidate that

Above: The effect of picture drawing and writing on the anxiety levels of children with cancer C. Sarı, N. Altay and E. Kilicarslan Toruner, Gazi University Faculty of Health Sciences, Paediatric Nursing, Ankara, Turkey.

nurses are truly committed to providing the best possible care from a patient-centred approach. This conceptual model describes the power of nursing in which nurses realise patients’ potential through a trusting relationship (See poster p31).

I shall treasure this award throughout my career, as will all of the oncology nurses in Japan. This recognition encourages us to be confident and proud of our profession, which involves supporting cancer patients to move forward, as the power of nursing is shared across borders.

EONS-9 – CONGRESS SPECIAL

CINDY KENIS “Going for the first time to the EONS Congress, my expectations were high. More specifically, I was wondering which topics are investigated within nursing research in the field of oncology nowadays.

I’ve been working for several years as a geriatric oncology nurse within the University Hospitals of Leuven, Belgium.

My main topic is focusing on how we can improve the quality of care for older patients with cancer in daily practice.

Due to an ageing population, this target group is increasing rapidly, meaning that every nurse has to deal with the special needs and concerns of older patients, par-

ticularly those with cancer.

Since early 2000, the systematic implementation of geriatric screening and assessment is recommended in all older patients with cancer, starting from the age of 70, when a treatment decision has to be made.

The presented poster gave an overview of the expectations and experiences of treating physicians according to this implementation in daily practice. Within the team making this implementation possible, the nurse is often the core member.

Looking back, the EONS-9 Congress will always stay in my mind as a great experience and an excellent opportunity to present our work to colleagues from all over the world. Winning the Best Poster Award is for me a highly appreciated acknowledgement of the importance of geriatric oncology.

Poster judge, EONS PresidentElect Daniel Kelly, said: “At conferences there are always gems of information contained within the poster exhibition and this year was no exception. The overall quality of submissions was high and the posters demonstrated the rich variety of research that cancer nurses engage in. The three winners were equally impressive but also different from each other in terms of their focus.

Each had addressed aspects of oncology nursing that are important and deserve more attention. The judges agreed that all were worthy winners of the poster prize at our congress in Istanbul.”

You can study the posters more closely at www.cancernurse.eu/EONS-9posters

Left: Implementation of geriatric assessment in older cancer patients: a survey on treating physicians’ general experiences and expectations C. Kenis, University Hospitals Leuven, Leuven, Belgium, with P. Heeren, L. Decoster, R. Moor, T. Pepersack, G. Jerusalem, J.P. Lobelle, J. Flamaing, K. Milisen and H. Wildiers

Right: Power of nursing: What makes nursing unique?

H. Komatsu and K. Yagasaki, Keio University, Faculty of Nursing and Medical Care, Tokyo, Japan.

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