EONS Newsletter October 2020

EONS13 was a fabulous virtual event attended by hundreds of cancer nurses from 19-21 September! Were you there? If not, don’t worry, you can catch up on everything that took place at the conference in this newsletter and online. Despite the pandemic preventing us being together in Madrid, EONS13 still offered many rich opportunities to find out about all the latest developments in cancer nursing. We hope you enjoy this review of the conference – and we very much hope to see you next year at EONS14, in Paris!

The Opening Session of EONS13 at ESMO Virtual Congress 2020 took place on Saturday 19 September, marking 2020 - Year of the Nurse and the Midwife as designated by the World Health Organisation. The conference had been planned to take place in Madrid and Julio César de la Torre Montero from the Spanish Oncology Nursing Society welcomed everyone to the virtual event and highlighted the importance of sharing knowledge and expertise during the COVID19 pandemic.

Cindy Franssen, Member of the European Parliament and Coordinator from the EPP Group on the Special Committee on Cancer then detailed how Europe’s Beating Cancer Plan will focus on prevention, environmental factors, innovative technologies, specialised care and treatments. It will put patients at its heart and seek to increase the efficiency of public spending on cancer while EONS also hopes it will improve the working environment for healthcare professionals.

Next, Dr Marilys Corbex from the WHO Regional Office for Europe underpinned the important role that nurses and midwives play in disease prevention, vaccination and screening programmes, and in reducing health inequalities. She emphasised that the WHO is advocating for and supporting the call for nurses to be given more responsibility in cancer control, as they are key to all aspects of cancer care, and for specialised education to become a national priority.

Nicolas Schmit, EU Commissioner for Jobs and Social Rights, then outlined the work of the European Commission on occupational safety focusing in particular on the amendment of the Directive 2004/37/EC - carcinogens or mutagens at work as well as other initiatives that aim at ensuring the health and safety of all workers, including healthcare professionals in their workplaces. The Commissioner added that health and safety at work will remain a key priority for the European Commission in the years to come, notably with a new Strategic Framework for health and safety at work that is currently under preparation.  

Professor Manuela Eicher who is also EONS Research Working Group Chair, concluded the session by introducing the importance of self-management support that cancer nurses and other health care professionals need to provide to cancer patients, to enable them to successfully manage various challenges throughout their cancer trajectory. She discussed the current evidence of self-management support interventions, presented a model for a stepped care approach and an action plan for implementation of self-management support in cancer care.

The session closed with the Award session. More on these below...

Lifetime Achievement Award 
Huge CONGRATULATIONS go to former EONS President Erik van Muilekom (pictured), from the Netherlands, who has received the EONS Lifetime Achievement Award 2020! The EONS Lifetime Achievement Award is designed to honour an outstanding personal and professional contribution made by an individual to the field of cancer nursing.

Erik van Muilekom started his nursing career in 1987. After his general training, he specialised in oncology and became a staff nurse at a surgical ward for abdominal surgery at the Netherlands Cancer Instituut-Antoni van Leeuwenhoek hospital in Amsterdam. He became a clinical nurse specialist in 2001 and finished his master degree in Advanced Nursing Practice in 2007. His focus in uro-oncology is the care and treatment of patients with localized and metastasised prostate, bladder and penile cancer, in a standard care and clinical trial setting. Erik has held many senior positions in the cancer nursing field. He has also been a faculty member of the prestigious EONS-ESO Masterclass.

Strengthening Equality in Healthcare Award
This Year of the Nurse and Midwife EONS decided to recognise two outstanding cancer nurses for their work in a special ‘ECND Strengthening Equality in Healthcare Award’ The winners for 2020 are – Bodil Westman, Sweden, and Celia Diez de los Rios, Spain – for their great contribution to reducing inequalities in healthcare

RECaN Award
The RECaN Award is presented annually to a cancer nurse who has made an outstanding contribution. The 2020 Award was presented to Michaela Popelkova, of the Czech Republic.

Michaela graduated as a nurse in 2017 at the 3rd Faculty of Medicine, Charles University, in Prague. The topic of her bachelor thesis was “Multidisciplinary care of the patient with breast cancer”. She was fascinated by cancer nursing and decided to work at the Oncology Department in Motol University Hospital in Prague – inpatient unit and day unit. She became a chief nurse of these units after one year. Michaela attended the ESO-EONS Masterclass in Oncology Nursing in 2018 in Budapest. She is an active member of the Czech Nurses Association – Oncology Section, and tries to improve the possibilities of education for oncology nurses in the Czech Republic. Michaela was a member of the Czech oncology nurses team which won the right to host ECND2019 in Prague.

Novice Research Dissemination Award
Phillipa Jupp is the 2020 winner of this award, with an excellent presentation on patient and staff experiences of online clinics, drawing on the findings of an in-depth patient questionnaire. Phillipa also found that nurse- and pharmacist-led telephone services can be a useful tool as pressure on services increases. This hands-on research will be extremely beneficial in the drive to take cancer nursing forward using new and existing technologies

Crucial to the development of cancer nurses and cancer nursing, is the identification of nursing roles and related recognition for nursing skills and development. EONS Board Member Virpi Sulosaari, opened this session with a look at the definitions and types of advanced nursing roles along the spectrum from generalist to specialist roles across Europe. Unfortunately, no European regulation currently defines specialist cancer nurse education and there is a lot of variance between EU Member States and the European region as a whole. EONS Past-President and Co-Chair of the Advocacy Working Group, Lena Sharp, provided an outline of what advanced practice nursing (APN) should be according to the International Council of Nurses (ICN), but found it not to be very clearly defined, other than needing a full Master’s degree. The nature of APN includes case management, diagnostic reasoning skills and advanced clinical competences, and leadership skills. However, it is a challenge to gain clinical experience before getting the Master’s degree; and afterwards hard to achieve recognition unless you have advanced practice experience.
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Bettina Ryll, an EU Cancer Mission Board member, spoke first about the experience of cancer patients during the COVID-19 pandemic and how patient-led networks help each other to provide evidence-based information, on COVID for example. In her opinion, the impact of COVID on cancer care was mixed. In many places there were treatment delays and suspensions, however, early detection and diagnosis services have probably suffered most, resulting in late diagnosis which will cause more problems in the long run. COVID-19 also brought more creativity and diversity into practice, innovations which could be integrated into regular practice. For example, care pathways in hospitals actually improved: patients spent less time in them and staff were more focused. This should continue after the pandemic ends. Bettina said: “Once COVID is over, everyone goes back to normal. Cancer patients go back to cancer.”
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The first speaker, Dr Martijn Lolkema from Erasmus Medical Centre in Rotterdam, The Netherlands, gave a clear overview on clinical trial design as a paradigm and how drug development in oncology occurs. After briefly outlining the fact that there are four phases of clinical trials, Dr Lolkema explained that an individualised treatment approach and decision-making is key for inviting the right cancer patients to the phase I clinical trial; a risk/benefit discussion and decision is crucial so long as patients are correctly informed (but risk/benefit cannot be determined in advance). He concluded that while it is crucial that patients participate in the clinical trials, it is also vital that they are well informed.
The next speaker, Liza van Lent also from Erasmus Medical Centre in Rotterdam, described patient journey experiences from referral for to participation in phase I clinical trials, illustrated by one (hypothetical) patient’s experience at the Centre.
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This session began by examining the importance of the often-overlooked area of communicating with parents of children or young adolescents with cancer. Such communication is key, as is understanding how childhood cancer changes parents’ lives, often stopping them from working, increasing their isolation and adding anxiety on top of change. Even after treatment, monitoring, control and safety places additional burdens on them. Johan de Munter from Belgium explained how in his workplace, a toolkit with five themes features tips and tricks for supporting parents and focuses on how to normalise a situation which is so alien for them. Yvonne Becque from the Netherlands introduced her Informal Carers at Home Project (InCaSu) with the statement that “It is not the load that gets you down, it is how you carry it”, thus neatly summarising the need to support informal carers. Cancer nurses can help caregivers but there are not very many tools to guide them to do this, so the project decided to try and develop one. A Carer Needs Assessment Tool identified 14 areas where they need support to care for the patient, depending on their role. The caregiver analyses these together with the cancer nurse, to see where they need more support and to create their own action plan. Training was also developed to help nurses use the tool. Its impact was evaluated by interviewing nurses that used it, however this step was recently impacted by the COVID-19 pandemic. Then Antonis Tryphonos looked at the major needs of carers in palliative care homes in Cyprus, focusing on problems of invisibility. Finally, Tsitsi Theologia, also from Cyprus, concluded the session by speaking about health literacy among informal carers in relation to breast cancer prevention, with reference to qualitative research carried out in three European countries.

Manuela Eicher, EONS Research Working Group Chair welcomed everyone to the session. The discussion began with Johan de Munter, EONS President-Elect, addressing the importance of communication, psychological support and identifying the impact of disease on young people’s lives. Next, Julia Ruiz Pato highlighted that follow-up is an integral part of the healthcare professional’s work, which ensures surveillance and intervention for early and late complication. Amanda Drury, EONS Board Member and YCN Network Leader shared the results from the Young Cancer Nurse Survey. This reflected the need for mentorship and more educational opportunities to support young cancer nurses. Last but not least, Charlotta Bergstrom from EONS Education Working Group presented sexual function in young adults following a brain tumour diagnosis and underpinned the role of healthcare professionals, and particularly cancer nurses, in creating a safe environment for the patients to open up and discuss their sexual concerns. The session ended with everyone agreeing that specialised education, better communication and mentorship are necessary to support adolescences and young adults in oncology.
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First, Michelle Hanan presented the specific considerations for older adults undergoing anti-cancer therapies. She emphasised that the lack of evidence to guide treatment decision-making and the fact that older adults are underrepresented on clinical trials, leading to both under and over treatments. She concluded that the benefits of comprehensive geriatric assessments are that they reveal problems that are not identified through traditional oncology assessments, and help reduce the risk of toxicity to older adults undergoing anticancer therapies.
Next, Martine Puts presented the draft of the position statement on oncology nursing care for older adults with cancer jointly developed by the International Society of Geriatric Oncology Nursing and Allied Health group  (SIOG NAH), EONS and the Canadian Association of Nurses in Oncology (CANO). She addressed the main reasons why we need a new position statement.  The number of older adults with cancer is increasing, and older patients are different from younger patients,: decline in most areas of physiological functioning, functional status, increasing cognitive impairment with increasing age, underrepresentation in clinical trials, different support systems and dependency on others. They may have unique and different needs to other cancer patients.
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The first speaker, Sara Colomer-Lahiguera from Lausanne, Switzerland, explained how  immunotherapy works and  the kinds of immune-related adverse events it can generate. Biomarkers such as cytokines, small molecules that mediate and regulate biological processes such immunity or inflammation, are associated with symptoms such as fatigue, pain or depression among others. Sara conducts a nurse-led project aimed at better understanding patients’ experience with immune checkpoint inhibitor treatments. Symptom questionnaires are filled in by patients every two weeks and blood samples collected to analyse biomarkers. This approach will help to gain knowledge on the evolution of symptoms and their underlying molecular mechanisms. Sara’s presentation was complemented by the last speaker in the session, Laura Bascuñana Sanchez, who spoke about new challenges in the management of immune therapy toxicities and how adverse events need responses and management by a multidisciplinary team. Algorithms have been developed to help manage the different adverse events from different toxicities depending on the organs affected.
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The final session of EONS13 focused on one of the most important campaign priorities for cancer nurses: the quality and safety of cancer patients and nursing safety. René Schwendimann opened the session with a focus on patient safety describing a study that found that that 1 in 20 patients are harmed by preventable events in healthcare. Some of these cases resulted in permanent disability and even death. In the Netherlands, a study of 32 Dutch hospitals found that 80% of healthcare workers have experienced harmful events. Sadly, these professionals feel ashamed and unconfident following such events even if they were out of an individual’s control. They need to talk and receive emotional support either from outside and/or from colleagues. Former EONS Board Member, Patrick Crombez then presented the results of the Cancer Nursing Education and Recognition in Europe survey, designed and carried out by the EONS Advocacy Working Group (AWG).  Similarly, Helena Ullgren, co-chair of the AWG, presented the results of the EONS occupational and safety survey among cancer nurses across Europe. The survey consists of two parts: EONS questions and a validated tool on hospital safety. Some of the data has been used to create a Cancer Nursing Index © (CNI). So far 632 responses have been received from different countries showing there is great variation within and between countries in terms of safety. In many areas, guidelines are not well followed, creating potentially dangerous situations especially for pregnant cancer nurses. Lena Sharp, Helena’s co-chair of the AWG and EONS Past-President, described the CNI in more depth before EONS Board Member, Matt Fowler discussed how this data is providing the basis for EONS advocacy work on occupational safety, and plans for a potential project on accreditation of hospital wards. He cited this powerful poem:

Manuela Eicher, EONS Research Working Group Chair, welcomed everyone to the session. First, Claudia Witt talked about advising cancer patients about complementary medicine. She used the definition that explains integrative oncology as “patient-centered, evidence-informed field of cancer care that utilizes mind and body practices, natural products, and/or lifestyle modifications from different traditions alongside conventional cancer treatments. Integrative oncology aims to optimise health, quality of life, and clinical outcomes across the cancer care continuum, and to empower people to prevent cancer and become active participants before, during, and beyond cancer treatment.”  She spoke about systematic trainings and consultations and criteria for reputable providers in complementary medicine.
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Opening the session, Christine Bienvenue from Switzerland defined an e-patient as a person that tries to participate fully in his or her medical care by gaining information, seeking advice, and finding support about their condition via sources, such as the internet and social media. This definition includes individuals that do so on behalf of a family member or loved one. The 'e' in e-patient may stand for one of various characteristics describing such an individual with respect to their health and making healthcare decisions. E-patients are also more likely to empower themselves to recover making the best use of evidence-based information and working with academics and medical teams to find the best solutions for their illnesses. Christine went on to outline projects that promote this model such as the Swiss Cancer Patients Experience (SCAPE) project and the HUG project in Lausanne and Cancer Research UK’s Partnership and Experiential Knowledge Project.
 
Professor Manuela Eicher outlined the iterative mechanisms for the development and implementation of Patient Reported Outcome Measures in cancer care. She highlighted that while understanding the patient experience of disease indeed nothing new in the nursing manual, developing patient reported outcomes and patient reported outcome measures with the patients at the heart of the process is relatively new, and the facilitation of PROs still all too often leaves patients out. ePROMS – the collection and measurement of PROS using electronic means has the potential to allow for far more meaningful patient engagement through online access and applications.

Finally, Professor Theresa Wiseman presented a practical co-designed (with people affected by cancer) e-tool pilot that aimed to create a flexible, low cost and “easy to administer” wellbeing intervention with a combination of virtual reality with relaxation and compassionate mind training. Patients worked together with the team to create the Safe Space Virtual Reality tool in which patients could experience three settings on a beach, forest and mountain scenery to follow guided relaxation exercises. These were tested on patients and adapted following their feedback.
 
In the live Q&A session for this symposium, Professor Timo Schinköthe introduced the Cankado App that assists cancer patients and oncologists in the phases of cancer treatment. This innovation works based on patient-reported outcome data allowing an efficient patient-physician interface and is available here

The session began with Daniel Kelly from the UK who stressed the importance of this aspect of cancer care in the present day. He underlined that it was key to both improving the care and the safety of patients and he clarified the role that cancer nurses can play in ensuring safety and providing the best possible experience for patients. He defined why patient-reported outcomes (PROMS) are relevant in TKIs: in helping define the acceptability of TX vs anticipated or new adverse events, for use as evidence of the benefit between different TXs, to tailor dosage, to judge efficacy based on tolerance, to focus on the patient not just the cancer and to have a clear link with the role of the cancer nurse in provision of supportive cancer care. He stressed the importance of getting a balance in weighing up different factors and making judgements.

Next, EONS President Andreas Charalambous from Cyprus (who also chaired the session), shared his knowledge on treating cutaneous side-effects induced by immune-therapy in patients with lung cancer. He focused on issues around skin and dose-dependent toxicities and went on to describe the different grades of adverse events and the management of immune checkpoint inhibitor-related toxicities. Finally, he outlined useful and practical ‘things to remember’ when addressing these issues in patients.

The last speaker, Aileen O’Meara from Ireland explained rare adverse events in immune-oncology. She discussed rare immune mediated adverse events (AEs), focusing on myocarditis and nephritis and the clinical presentation and incidence of these. She reviewed the current guidelines for management of these AEs with reference to the American Society of Clinical Oncology, the National Comprehensive Cancer Network and ESMO.

First, Johan de Munter, EONS President Elect provided an insight on the University Hospital Ghent Cancer Centre nurse-led e-health support in cancer care during the SARS-CoV-2 pandemic by sharing the results of a single centre observation. He emphasised the need for continuous monitoring, analysing, flexibility and adapting of services due to the lack of experience with a real pandemic. Some of the challenges included maintaining delivering high quality care, infection prevention, delivering appropriate information and psychological support, preventing stress and anxiety among patients and caregivers and preventing a care gap in screening, diagnosis, treatment and follow-up. He added that during the pandemic modifications in hospital communication infrastructures were needed, with telephone consultations from/to patients. Tele-nursing became a norm and patients would send pictures to receive clinical (medical assessments), educational (sharing leaflets and information), psychological and administrative (referral to more specialist care) support. Physical meeting during the pandemic reduced but there was a massive increase in telephone support in his Centre.
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EONS is grateful to its sponsors for making this valuable extra resource possible.

The European Health Forum Gastein 2020, included a session called: ‘’Tackling access inequalities in cancer care - bridging the gap with Europe’s Beating Cancer Plan’’.  All panellists stated that patients across Europe should receive the same standards of quality cancer care regardless of where they live, and agreed cancer nursing specialisation is an important part of the solution.
 
In particular, the inequality between countries in Central and South-Eastern Europe and Western Europe is striking. The COVID-19 pandemic has served as a magnifying glass on existing disparities, and the economic disruption it caused threatens to deepen them even further. Christian-Silviu Busoi, the Member of the European Parliament who represents Romania, addressed the health inequalities which sometimes occurs not only at national but also at regional level.

Antonella Cardone, Director at the European Cancer Patient Coalition (ECPC), addressed the inequalities in early diagnosis, early screenings, access to affordable care and trials, survivorship care and the right to be forgotten for cancer patients.

Next, Christoph Zielinski, President at the Central European Cooperative Oncology Group underpinned that the approval of new medicines by FDA and EMA should be implemented according to the ESMO Magnitude of Clinical Benefit Scale, which are based on ‘’value’’ rather than statistical significance and should be reimbursed. Prevention, screening programmes and early detection are necessary to tackle the burden of cancer in Europe.
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Another European Health Forum Gastein 2020 session entitled: “Universal health coverage and the role of the health workforce’’ also addressed health inequalities in terms of access to care. The panellists highlighted that vulnerable groups have been hardest hit by COVID-19 and the lockdown measures, which exacerbated already challenging conditions such as diabetes and working conditions. 

Some of the main challenges for the health workforce included high levels of work and stress, lack of personal protective equipment, high numbers of patients and not knowing what to expect next due to limited knowledge about the disease. Education and training, as well as keeping the workforce happy and satisfied, are key elements in which national governments should invest, in order to cope with the threats of tomorrow. The COVID-19 pandemic has made it clearer than ever that health is a global issue, that the protection of vulnerable groups is vital to ensuring universal health coverage and that healthcare systems and the workforce must be supported. 
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