Research Working Group - Updates from 2016

December 2016: How does the proportion of professional nurses affect mortality, patient satisfaction and quality of care?

Dr Linda Aiken and colleagues have recently published yet another important paper (1) on the importance of professional nurses and how nurses impact hospitals critical clinical outcomes. In this study, included in the so called RN4CAST project, data from 243 acute care hospitals in Poland, Belgium, Finland, England, Ireland and Switzerland were included.

Data in this study include;

  1. patients discharge data (reported by the hospitals)
  2. hospital administration information
  3. patient and nurse surveys

The results show that higher proportion of professional nurses, RNs, (among all nursing staff) was associated with lower mortality rates, higher patient satisfaction, patient safety and quality of care. The authors conclude that a bedside workforce with greater proportion of professional nurses is associated with better outcomes for both patients and nurses. The authors also point out the risks with replacing RNs with other nursing staff, such as nurse assistants.

But what if no care at all can be delivered due to nursing shortages? Many European countries report closed hospital beds and delayed treatments due to nursing shortages. They authors however argues that higher proportions of RNs helps recruitment and reduce staff turnover levels.

On the other hand, there is a great variation in hospital nursing skill mix, both between and within countries. The proportion of RNs varies between the six countries from 41% to 87% (mean 66 %). Another important issue is that there is no standardized qualification of nurse assistants in Europe, meaning that the skills may vary considerably.

So are nurse assistants and/or health care assistants not needed in modern acute hospital care? I would strongly argue that they are, but of course they need appropriate education to deliver basic nursing care, which is of great importance for patients and their families. However, the skill mix of nursing staff needs to be further studied for difference areas of acute hospital care and also with clear descriptions on the education levels for all groups of nursing staff.

The authors also point out some limitations with the cross-sectional study design, the use of different patient rating instruments, moderate response rates etc.

Lena Sharp

1. Aiken LH, Sloane D, Griffiths P, Rafferty AM, Bruynee L, McHugh M, Maier CB, Moreno-Casbas T, Ball JE, Ausserhofer, D, Sermeus W. For the RN4CAST Consortium. Nursing skill mix in European hospitals: cross-sectional study of the association with mortality, patient ratings, and quality of care. BMJ Qual Saf Published Online First 15 November 2016 as 10.1136/bmjqs-2016-005567

November 2016: Reflections on EONS 10: inspirations, challenges and a sense of renewed pride

By Elisabeth Patiraki, Professor of Nursing, Nursing Faculty, National and Kapodistrian University of Athens

Thanks to the untiring efforts of the scientific committee of EONS 10, the Irish Association for Nurses in Oncology (IANO) and the Irish Cancer Society, a highly fruitful conference took place in Ireland’s capital city, Dublin, on 17 and 18 October, alongside the 18th International Psycho Oncology Society (IPOS).

There is indeed plenty to reflect upon and this may enhance our individual and collective contribution to meeting health care needs in a changing context.

The event brought together over 500 nurses from more than 30 countries. Nurse delegates, who were the lifeblood of the conference, journeyed from different parts of the world to Dublin, eager to share their experiences, ideas, concerns, and specific needs as they relate to oncology nursing today.

The excellent two-day programme consisted of 42 oral presentations, 32 invited speakers, a joint EONS-ESO special session, an ISNCC-ONS interactive panel discussion, a PhD research networking session, five satellite symposia and 128 poster presentations that shed light to cancer care and its specific variations among countries, using multiple philosophical and theory-based approaches as well as diverse methodologies within nursing research.

Research trends in oncology nursing are reflected in the great variety of poster themes:

  • New developments in Cancer Nursing (17)
  • Prevention, early detection and lifestyle (7)
  • Symptom assessment and management (33)
  • Management of long term consequences and survivorship (8)
  • Cancer care in the community (1)
  • Clinical leadership and development (5)
  • Palliative Care (9)
  • Oncology Nursing research (33)
  • Psychosocial issues-patients and/or families (15)

Symptom management and oncology nursing research continue to be of great importance, but other emerging themes underline other research priorities, illustrating the varied expertise of nurse researchers. However, the inequalities in research development are reflected in the fact that still the vast majority of the presented studies are coming from countries that recognise the enormous difference specialist, highly educated cancer nurses make to the lives of people with cancer.

Up-to-date topics, evidence-based practice, systematic reviews and meta-analyses highlighted the role of nursing research, expanding the capacity of oncology nurses to address current and future challenges in “Balancing health care needs in a changing context”.

This important scientific and educational event also provided a valuable networking opportunity for sharing experiences and learning and set the stage for further cooperation among nurses in Europe and beyond, including countries at different stages of cancer nursing development. Our minds have been assailed by a torrent of ideas, information, statistics, interpretations, tweets and visions.

Research, which was once a topic confined to academic circles, has now become part of oncology nurses’ everyday world and is vital to improving nursing practice. But, still only a few presented studies were multicentre and multinational. Moreover, today's complex cancer care demands are not amenable to single-discipline research approaches. While nursing, social science, and biomedical research approaches make unique and independent contributions to cancer care, they also complement each other and bring balance to health care needs and research agenda. Interdisciplinary research is an essential characteristic of nursing research because multiple perspectives are required for study the complex experiences of cancer patients.

Nursing research in the oncology era faces a number of challenges and opportunities stemming from rapid growth and limited resources. In the past two decades, with the rapid expansion of resources for research, nursing’s contribution to evidence-based practice and health policy has increased exponentially, overcoming the challenges preventing the discipline of oncology nursing from achieving its full scientific potential.

In order for nursing to be at the forefront of knowledge generation and address societal issues and health care, nursing research must be relevant to health and illness situations, scientifically rigorous, and readily translatable into practice and health policy. The science of nursing is growing rapidly and oncology nurses are committed to the changes posed by the constant progression of new knowledge.

A lot has been done. Nursing research has gained a significant place in science and health care.

It is our sincerest hope that the solid science nursing research has built over the past years will help oncology nurses meet new challenges in cancer care in the years to come. Our ultimate goal is to improve cancer care outcomes for every person with cancer and their family, because every patient deserves the best!

We already carry all the power we need inside ourselves. We have the power to imagine better.

October 2016: Ethics in research and care: things to be learned from the Macchiarini case

At the beginning of this year, 2016, Swedish Television broadcast The Experiment, a documentary exposing misconduct concerning transplants of synthetic tracheas made by Paulo Macchiarini. Macchiarini was employed as visiting professor at Karolinska Institutet (KI) and as senior physician at Karolinska University Hospital; both these employments have now been terminated.

From 2011 to 2013 he performed transplants of synthetic tracheas prepared with bone marrow cells on three patients at the hospital. All three suffered significantly from severe complications and two of them are dead. One has required continuous hospital care since the transplants in 2012 but underwent a lung and oesophagus transplant in May.

After the documentary was broadcast, the Macchiarini case became a long-running story in the media, which has been good. I think we all agree that this is a terrible story that has caused unforgivable suffering for both patients and their relatives. Not as significantly, but still importantly, this has damaged trust in research and care, even if we all know we have colleagues both in care and research working hard on saving lives, alleviating suffering and implementing a culture of patient safety. Hopefully the Macchiarini case is an uncommon event, but to prevent similar things from happening in future we need to be aware of others and our own actions. Therefore, I believe it is important to see what we can learn from this case. Recently an external inquiry into the handling of matters related to Macchiarini at KI and an external investigation, below referred to as “the investigation”, of the transplantations made at Karolinska University Hospital have been published. In this research update I describe and reflect on some of the issues raised in the latter document. First I want to declare that I have not reviewed the Macchiarini case in detail, but followed the media coverage, read about the case and participated in discussions at work.

In the investigation it is said that the Macchiarini case has damaged trust in clinical research. Restoring that trust demands efforts based on sound ethics, high patient safety and respect for rules and regulations. Because clinical research is of importance for evidence-based care, my reflection is that we all need to work towards a climate where this is always done and in which we can be constructively critical towards what we and others are doing.

The importance of working with such issues is highlighted from the investigation, in which we can read that a lack of critical questioning contributed to the course of events. The investigators describe how group thinking may have contributed to the fact that Macchiarini’s clinical colleagues did not ask critical enough questions or raise objections before the transplants. There were, however, four clinical physicians that in formal ways questioned what was going on. Unfortunately, they were not taken seriously but were instead, from what I have read in the media, badly treated. If you are interested in reading “the whistle-blowers’ own words” from February this year, you can find them here:
http://www.sjukhuslakaren.se/the-macchiarini-case-read-the-whistleblowers-own-words/.

What happened to them is in line with what the investigation observed; a culture of silence in which people are cautious with criticising “upwards” to avoid putting their position at risk.

The report of the investigation describes differing opinions on the case - whether it was medical care of severely ill individuals who had no other alternatives, or clinical research. From my perspective, working as a researcher in palliative care, I would like to add that within the frame of palliative care there are many alternatives for care which seems not to have been considered.

Back to the investigation: the investigators concluded that the transplants involved research and consequently should have been reviewed under the Ethical Review Act. This had not been done. The investigators found it very unlikely that the transplants would have been approved by an ethical review board. My reflection is that if we are unsure about the research ethics in a project, for example including research based development, it is a good idea to submit it for ethical review. If such a review is not needed, the review board will tell us.

But how severely ill were the patients? The report of the investigation says that they were not at all in immediately life threatening conditions. Two of the patients had progressive cancer that would probably have led to death, but in the long term. One had complications, such as infections, from a tracheal injury that entailed a threat to her life, but not an immediate threat. My reflection is that when reporting from the operations, saying that this was “their last alternative” seems to be false based on the investigation’s observations. Is/it the case that we have to remind ourselves to always be honest and tell the truth about what we are doing and our findings?

Well, more is coming. The investigations describe clear weaknesses in how informed consent was obtained even if the patients were fully capable of making decisions. As I understand the case, the patients never got true information; for example, they were not told that results from animal studies were mixed. From the TV documentary it instead seemed they had been informed these results had been successful. The investigation found that the written information given did not make it possible for the patients to understand the content or refrain from the procedure. My reflection is, do we really have to remind ourselves about one of the foundations of research ethics? Yes, it seems so… In the Nuremberg code, you know one of the codes developed from the eye-opening discussions of research ethics issues that took place after World War II the following is stated in its first point.

“The voluntary consent of the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated as to be able to exercise free power of choice, without the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form of constraint or coercion; and should have sufficient knowledge and comprehension of the elements of the subject matter involved, as to enable him to make an understanding and enlightened decision. This latter element requires that, before the acceptance of an affirmative decision by the experimental subject, there should be made known to him the nature, duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonably to be expected; and the effects upon his health or person, which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality of the consent rests upon each individual who initiates, directs or engages in the experiment. It is a personal duty and responsibility which may not be delegated to another with impunity.”

Well, much has been and more will be said about the Macchiarini case. These were just some personal reflections, as a Swedish oncology nurse and researcher member of the EONS Research Working group. I hope it will stimulate reflections around ethical issues in research but also in treatment and care.

Ulrika Östlund

September 2016: Chemotherapy erases fingerprints

Wendy Oldenmenger of the Research Working Group

Nurse practitioners in oncology do conduct interesting research. Like one of them in my hospital, Erasmus MC in the Netherlands. Leni van Doorn conducted her study together with the police force and recently published the results in the JAMA Oncology journal. This study has shown that Capecitabine, a commonly used anti-cancer agent, leaves a substantial portion of patients without fingerprints. The side effect is temporary, however: textured fingertips return within two to four weeks following cessation of treatment. Capecitabine is one of the world’s most widely used anti-cancer agents. It is given to patients affected by breast cancer, colon cancer, rectal cancer, gastric cancer and other types of cancer. “We had long suspected that this agent could affect patients’ fingerprints, but the exact mechanism was unknown,” said one of the medical oncologists who carried out the study.

The police and researchers at Erasmus MC decided to study this effect, in part because of the increasing importance of fingerprints in many areas of public life. For example, law enforcement experts use fingerprints to establish the identity of suspects, fingerprints are required when applying for a passport in the Netherlands, for entering certain countries (including the USA), and increasingly as a replacement for traditional password-based login credentials in electronic devices such as laptops and smartphones.

The study involved 150 patients who together had their fingerprints taken (all ten digits) a total of 337 times. “Among patients taking Capecitabine, we saw that fingerprints disappeared almost entirely in 14 percent of cases,” says Leni van Doorn, a cancer nurse practitioner. She was the study coordinator and researcher of this study. Doctors and patients should therefore be aware of this side effect. “Patients planning on going abroad should take a letter from their oncologist explaining their situation.”

Patients using capecitabine and have vacation plans? Get a letter from your oncologist!

Fingerprint loss is a temporary condition. The unique contours on the fingertips return unchanged two to four weeks following cessation of treatment. This fact is important for law enforcement, as Sebastian Veelenturf of the police force in The Hague explains: “We know that an individual will not develop different fingerprints following treatment with Capecitabine. It is not possible to assume a new identity in such situations.” For several years, the police have been taking the fingerprints of every suspect upon arrest to establish their true identity. Veelenturf explains the reasoning: “Suspects sometimes use tricks to sabotage their fingerprints, causing them to deteriorate. We are now aware of a category of individuals who, through no fault of their own, have drastically deteriorated fingerprints.”

It was already known that Capecitabine can cause skin abnormalities on the hands and feet, and the suspicion had been that these abnormalities (hand-foot syndrome) caused the fingerprints to disappear. This study has now shown that there is in fact no link between hand-foot syndrome and the deterioration of fingerprints.

Publication:
Van Doorn L., Veelenturf S.A.P., Binkhorst L., Bins S., and Mathijssen R.H.J. Capecitabine and the risk of fingerprint loss , JAMA Oncol. (Epub August 2016).

August 2016: A round-up of useful journal articles

Research Working Group member Iveta Nohavova has picked out a selection of journal articles that will be of interest to cancer nurses.

We have included the abstracts below, but you will usually need an institutional subscription to view the articles, or alternatively can pay to download them.

Work engagement in professional nursing practice: A systematic review.
Keyko K, Cummings GG, Yonge O, Wong CA
International Journal of Nursing Studies, published online and awaiting print publication.

Abstract

Background
Work engagement in professional nursing practice is critically important to consider when addressing key challenges of health systems, including the global nursing shortage, pressures to reduce health care spending, and increasing demands for quality care and positive outcomes for patients. However, research on work engagement in professional nursing practice has not yet been synthesized and therefore, does not provide a sufficient foundation of knowledge to guide practice and further research.

Objectives
The overall aim of this systematic review is to determine what is currently known about the antecedents and outcomes of work engagement in professional nursing practice.

Design
Systematic review.

Data sources
The search strategy included eight electronic databases: CINAHL, MEDLINE, PsycINFO, PROQUEST, SCOPUS, Web of Science, EMBASE, and Business Source Complete. The search was conducted in October 2013. Quantitative and qualitative research that examined relationships between work engagement and antecedent or outcome factors was included.

Review methods
Quality assessment, data extractions, and analysis were completed on all included studies. Data extracted from included studies were synthesized through descriptive and narrative synthesis. Content analysis was used to categorize factors into themes and categories.

Results
3621 titles and abstracts were screened and yielded 113 manuscripts for full text review. Full text review resulted in 18 included studies. All factors examined were grouped into either influences or outcomes of work engagement. A total of 77 influencing factors were categorized into 6 themes: organizational climate, job resources, professional resources, personal resources, job demands, and demographic variables. A total of 17 outcomes of work engagement were categorized into 3 themes: performance and care outcomes, professional outcomes, and personal outcomes. Based on the results, we adapted the Job Demands-Resources (JD-R) model and developed the Nursing Job Demands-Resources (NJD-R) model for work engagement in professional nursing practice, which reflects key adaptations related to organizational climate and professional resources.

Conclusions
Our findings indicate that a wide range of antecedents, at multiple levels, are related to registered nurses’ work engagement. Positive outcomes of work engagement are valuable to both performance and the individual nurse. The NJD-R model offers nursing science a valuable beginning framework to understand the current evidence, further direct nursing research, and begin to guide practice and policy. The results offer opportunities for nurse leaders to promote work engagement in professional nurses through action on organizational level resources.

Cigarette Smoking Before and After Breast Cancer Diagnosis: Mortality From Breast Cancer and Smoking-Related Diseases.
Passarelli MN, Newcomb PA, Hampton JM, Trentham-Dietz A, Titus LJ, Egan KM, Baron JA, Willett WC
Journal of Clinical Oncology, published online January 2016.

Abstract

Purpose
Cigarette smoking increases overall mortality, but it is not established whether smoking is associated with breast cancer prognosis.

Methods
We evaluated the association between smoking status before and after breast cancer diagnosis and mortality in the Collaborative Breast Cancer and Women’s Longevity Study, a population-based prospective observational study conducted in Wisconsin, New Hampshire, and Massachusetts. Participants included 20,691 women, ages 20 to 79 years, diagnosed with incident localized or regional invasive breast cancer between 1988 and 2008; a subset of 4,562 of these women were recontacted a median of 6 years after diagnosis. Hazard ratios (HRs) with 95% CIs were calculated according to smoking status for death as a result of breast cancer; cancers of the lung, pharynx, or intrathoracic organs; other cancer; respiratory disease; and cardiovascular disease.

Results
During a median of 12 years, 6,778 women died, including 2,894 who died as a result of breast cancer. Active smokers 1 year before breast cancer diagnosis were more likely than never smokers to die of breast cancer (HR, 1.25; 95% CI, 1.13 to 1.37), respiratory cancer (HR, 14.48; 95% CI, 9.89 to 21.21), other respiratory disease (HR, 6.02; 95% CI, 4.55 to 7.97), and cardiovascular disease (HR, 2.08; 95% CI, 1.80 to 2.41). The 10% of women who continued to smoke after diagnosis were more likely than never smokers to die of breast cancer (HR, 1.72; 95% CI, 1.13 to 2.60). When compared with women who continued to smoke after diagnosis, those who quit smoking after diagnosis had lower mortality from breast cancer (HR, 0.67; 95% CI, 0.38 to 1.19) and respiratory cancer (HR, 0.39; 95% CI, 0.16 to 0.95).

Conclusion
Smoking before or after diagnosis was associated with a higher mortality from breast cancer and several other causes.

Assent for children’s participation in research: why it matters and making it meaningful.
Oulton K, Gibson F, Sell D, Williams A, Pratt L, Wray J Child: care, health and development. Published online May 2016.

Abstract

Background:
There are gaps in the existing evidence base about assent, with conflicting and unhelpful views prevalent. We contend that appropriate assent is a valuable process that has important consequences for children's/young people's participation in research. Furthermore, there is a need for a model to support researchers in making decisions about who to assent and how to do this is a meaningful way.

Methods:
We undertook a scoping review of the literature to assess the body of opinion on assent in research with children/young people. An anonymous online survey was conducted to gather views from the wider community undertaking research with children/young people. We also sought to gather examples of current and effective practice that could be shared beyond the level of a single institution and our own experience. Survey participants included 48 health professionals with varied levels of experience, all actively involved in research with children.

Results:
Published work, the findings from the online survey and our knowledge as experienced researchers in the field have confirmed four domains that should be considered in order for assent to be meaningful and individualized: child-related factors, family dynamics, study design and complexity and researcher and organizational factors. Mapping these domains onto the three paradigm cases for decision-making around children and young people's assent/consent as recommended by the Nuffield Council on Bioethics has resulted in a model that will aid researchers in understanding the relationship between assent and consent and help them make decisions about when assent is appropriate.

Conclusions:
The debate about assent needs to move away from terminology, definition and legal issues. It should focus instead on practical ways of supporting researchers to work in partnership with children, thus ensuring a more informed, voluntary and more robust and longer lasting commitment to research.

Couple-Based Psychosexual Support Following Prostate Cancer Surgery: Results of a Feasibility Pilot Randomized Control Trial.
Robertson J, McNamee P, Molloy G, Hubbard G, McNeill A, Bollina P, Kelly D, Forbat L
The Journal of Sexual Medicine, published online June 2016, awaiting print publication.

Abstract

Introduction
Surgery for prostate cancer can result in distressing side effects such as sexual difficulties, which are associated with lower levels of dyadic functioning. The study developed and tested an intervention to address sexual, relational, and emotional aspects of the relationship after prostate cancer by incorporating elements of family systems theory and sex therapy.

Aims
To develop and test the feasibility and acceptability of relational psychosexual treatment for couples with prostate cancer, determine whether a relational-psychosexual intervention is feasible and acceptable for couples affected by prostate cancer, and determine the parameters for a full-scale trial.

Methods
Forty-three couples were recruited for this pilot randomized controlled trial and received a six-session manual-based psychosexual intervention or usual care. Outcomes were measured before, after, and 6 months after the intervention. Acceptability and feasibility were established from recruitment and retention rates and adherence to the manual.

Main Outcome Measures
The primary outcome measurement was the sexual bother subdomain of the Expanded Prostate Cancer Index Composite. The Hospital Anxiety and Depression Scale and the 15-item Systemic Clinical Outcome and Routine Evaluation (SCORE-15) were used to measure emotional and relational functioning, respectively.

Results
The intervention was feasible and acceptable. The trial achieved adequate recruitment (38%) and retention (74%) rates. The intervention had a clinically and statistically significant effect on sexual bother immediately after the intervention. Small decreases in anxiety and depression were observed for the intervention couples, although these were not statistically significant. Practitioners reported high levels of adherence to the manual.

Conclusion
The clinically significant impact on sexual bother and positive feedback on the study's feasibility and acceptability indicate that the intervention should be tested in a multicenter trial. The SCORE-15 lacked specificity for this intervention, and future trials would benefit from a couple-focused measurement.

July 2016: More on our project to boost recognition of cancer nursing

Professor Daniel Kelly, EONS President and Research Working Group member, sets out the goals for a project that will emphasise nursing’s key role in cancer treatment.

The main research activity for the next two or three years will be the ECCO/EONS RECaN (Recognising European Cancer Nurses) project. This will be a three-phase project, the first phase of which is already underway with the Nursing, Midwifery & Allied Health Research Unit in Stirling, Scotland. This involves a systematic review of the evidence of the benefits that nursing makes to people with a cancer diagnosis.

We will then move on to Phase Two, which will be case studies of four countries with differing levels of recognition of cancer nursing. Decisions about the countries will be made soon and we will work closely with national societies in each to ensure we get as much relevant information as possible.

The final phase will involve advocacy work to ensure that our findings reach the ears of politicians and health service providers across Europe. We hope to arrange a series of events during this phase, so do keep a look out for these.

The next important date is the ECCO Congress in Amsterdam next January. We will be presenting our Phase One findings and starting the debate about why and how to ensure that the value of cancer nursing is better recognised.

We will be sharing information via twitter (@cancernurseEU), the EONS website, newsletter and magazine. Please get in touch if your national society would like to hear more about this work.

June 2016: Soft Tissue Sarcoma: Guide for Patients

Jorge Freitas of the Education Working Group introduces a new guide for sarcoma patients, created with EONS help.

Patients and caregivers need to understand the nature of different types of cancer, to help them evaluate the best available treatment choices.

Soft tissue sarcomas are a diverse group of malignant tumours that originate when abnormal cells grow out of control in soft tissues and connective tissues. Soft tissues can be found in any part of the body and include muscles, tendons, fat, blood and lymph vessels, nerves and joint linings (synovial tissue). The type of sarcoma depends on the kind of cells it arises from. Connective tissues include all tissues that support, connect or separate different tissues in the body. Soft tissue sarcomas, therefore, can grow almost anywhere, but are most common in arms and legs, followed by trunk and abdomen, and head and neck area.

This guide for patients will find answers to the questions:

  • Are soft tissue sarcomas frequent?
  • What causes soft tissue sarcomas?
  • How are soft tissue sarcomas diagnosed?
  • What is it important to know to get the optimal treatment?
  • What are the treatment options?
  • What are the possible side effects of the treatments?
  • How can Patient Support Groups help?
  • What happens after the treatment?

This guide for patients has been prepared in collaboration with Anticancer Fund as a service to patients, to help patients and their relatives better understand the nature of soft tissue sarcomas and appreciate the best treatment choices available according to the subtype of soft tissue sarcomas. ESMO recommends that patients ask their doctors about what tests or types of treatments are needed for their type and stage of disease.

This publication was created in collaboration with EONS, specifically Anita Margulies and myself.

+  Download the Soft Tissue Sarcoma Patient Guide

May 2016: Influence of psychological variables in the evolution of hematopoietic transplantation, by Nuria Domenech Climent

Hematopoietic transplantation (HPT) is a high sophisticated and complex medical procedure with the objective of replacing the hematopoietic tissue and it is used mainly for the haematological cancer treatment. Although the HPT was originally a treatment of last resort, is now widely used for both haematological malignancies and other diseases. In some cases, HPT can serve as a rescue procedure to reconstitute the hematopoietic system after the QT and RT, because stem cells have the capacity for self-renewal and differentiation into all blood cell lineages.

From the time of diagnosis and throughout the disease process, the patient will present psychological reactions associated with the diagnosis: fears about the possibility of not finding a compatible donor, medical test and/or treatment complications, with the progression of the disease and long-term sequelae are generated. All these factors related to the transplant process will produce an impact on their emotional health, their daily tasks will be interrupted and created unrealistic expectation about the time back to “normal” will be created. These reactions are normal and necessary to get to develop coping strategies and reach psychological adjustment. However, it is estimated that 25% of patients and/or family members who are subject to PHT presented psychological alterations that require specialized care. The most common of these are symptoms of depression or mild/moderate anxiety.

There are many studies that examine the psychosocial factors related with the haematological transplant outcome, however studies on the issue have provided controversial results. And, if it seems evident that the HPT is a process associated with high psychological/psychiatric morbidity, it seems appropriate that it is advisable to evaluate individual psychosocial risk to minimize the risk of psychological maladjustment of the patient and family, to optimize the quality of life and promote better adherence, as these psychosocial factors have a significant role in the recovery and rehabilitation to long-term life after receiving a transplant.

A few days ago I had the opportunity to read a Ph thesis which spoke of attachment, anxiety and/or depression as predictors of the evolution of a transplant patient. A prospective longitudinal study of all patients undergoing hematopoietic transplant (73% autologus and allogeneic 26%) was performed. A psychological evaluation was made before transplant, using the following test: Montgomery-Asberg Depression Rating Scale (for depression), STAI State-Trait Anxiety Inventory (for state anxiety and rate anxiety), the Adult Attachment Interview (for attachment patterns: secure, ambivalent insecure and avoidant insecure) and the Affective Distance Test (for the patient-doctor affective distance measure).

The analysis results showed that some psychological variables determined the evolution and outcome of a hematopoietic transplantation. Patients with depression at the beginning of the transplantation had a greater number of secondary infections, as well as a worse disease-free survival from 3 to 6 months and a worse global survival 6 months after transplantation. The insecure attachment pattern influenced negatively, increasing some complications, aggravating the outcome of the transplantation and survival at 3, 6 and 12 months after the transplant has been performed.

The data presented are highly summarized (you can read all the research in http://hdl.handle.net/10201/48143) and besides this, we would need clinical trials to give us sufficient scientific evidence to make conclusions, but it is obvious that the associations presented in this study are massively involved in the planning of nursing care.

In nursing practice, it is very important to recognize and work with the emotional aspects of these patients to develop effective strategies for the proper management and control of the situation. The identification of these factors could provide an excellent nursing care that would minimize the psychological effects. These interventions are positive because they can help to increase the effectiveness of treatment and reduce complications, and this translates into more positive health outcomes and higher quality of life. The associations demonstrated in this research imply important clinical finding. Their implications could reach other patients in the transplantation process, as well as patients with other serious pathologies that reduce intensive therapies and care. We believe they could be facing the same difficulties and needs furthermore, similar psychological responses may also appear. For this reason, we dare to suggest the need of a greater acknowledgement of the psychological aspects of the patient and this study opens the door to future nursing studies that demonstrate the need to plan and protocolise activities aimed at reducing the psychological aspects.

Definitely, a very interesting field of nursing research.

April 2016: Looking forward to our first workshop for PhD students, by Professor Mary Wells

This month we are preparing to host the 2016 EONS research workshop at the University of Stirling, where I work as a Professor of Cancer Nursing Research and Practice in the Nursing, Midwifery and Allied Health Professions Research Unit.

This will be our 5th Research workshop but it will be a little different from the others as it is targeted specifically at PhD students who are also cancer nurses.

We were delighted with the response and have selected 20 nurses to participate, from Italy, the Netherlands, Portugal, Greece, Iceland, Sweden, Ireland, UK, and Turkey.

My co-facilitators are Professor Danny Kelly, Dr Ulrika Ostlund and Dr Elisabeth Patiraki, and we are putting together a programme of presentations and interactive sessions to enable the PhD students to talk about their work, discuss real life research problems and develop links with each other to foster a Europe-wide network of early career researchers in cancer nursing. The University of Stirling is a beautiful campus, with a lake and a castle, so we also hope to enjoy some walking breaks in the May sunshine!

We will report back later in the year to tell you more about the workshop, and look forward to continuing to foster and encourage high quality research in cancer nursing through EONS.

March 2016: Striving to meet cancer patients’ needs and the rise of care rationing, by Andreas Charalambous

Cancer has been acknowledged as a major cause of patient morbidity and mortality around the world. Future projections estimate that the people who will be affected by cancer will increase dramatically despite the many screening and prevention campaigns. As a result more people will require care for their cancer, many of whom will be treated as inpatients. Cancer itself, its various treatments and their toxicities generate numerous needs for the person diagnosed with cancer and his or her family. The chronic nature of the disease means that many of these needs occur from diagnosis and onwards and continue through time, often persisting long after the treatment has ended.

Nurses face a great challenge in providing quality care to these patients by addressing their needs holistically, needs which often surpass the needs of other types of patients, as well as meeting the needs of the patients’ families especially during hospitalization. Caring for the cancer patient holistically can be challenging and overwhelming for the nurses within the clinical context. The difficulty arises from the complexity of the patients’ needs that may include physical needs, emotional and psychological support, psychosocial needs and informational needs just to mention a few. These complex needs combined with the clinical setting specificities (i.e. organizational issues) and the nurses’ personal beliefs and skill mix can all contribute to the rise of the phenomenon of care rationing.

Although a consensus definition of rationing of nursing care is lacking, it can be simply described as nursing care that has been omitted or delayed. The definition has been complemented by two mainstream models in this field, namely The Missed Care Model (Kalisch et al., 2009) and the conceptual framework regarding rationing of nursing care developed by Schubert et al. (2008). Although the rationing of nursing care is not a new concept in the literature, it has not received adequate attention by scholars. It was, only in the last decade has this problem received increased attention from nursing scholars as a means to improve the provision of quality care to cancer patients and increase patient outcomes.

Within the cancer care context the available evidence is scarce and is limited to just one study (Friese et al.2013), a fact that contributes to the poor understanding of this phenomenon within this highly specialized field of care. A recent paper by Papastavrou et al (2016) sheds light on this phenomenon by exploring the missed care in the cancer care setting by taking into consideration the complexity of the patients’ needs and the organizational context. The study highlights the need for further study in this field also by exploring the contribution of factors such as the skill mix to the phenomenon of nursing rationing.

References

Schubert, M., Glass, T.R., Clarke, S.P., Aiken, L.H., Schaffert-Witvliet, B., Sloane, D.M., De Geest, S., 2008. Rationing of nursing care and its relationship to patient outcomes: the Swiss extension of the International Hospital Outcomes Study. Int. J. Qual. Health Care 20, 227e237.
http://dx.doi.org/10.1093/intqhc/mzn017.

Friese, C.R., Kalisch, B.J., Lee, K.H., 2013. Patterns and correlates of missed nursing care in inpatient oncology units. Cancer Nurs. 36, E51eE57.
http://dx.doi.org/ 10.1097/NCC.0b013e318275f552.

Kalisch, B.J., 2009. Nurse and nurse assistant perceptions of missed nursing care: what does it tell us about teamwork? J. Nurs. Adm. 39, 485e493.
http:// dx.doi.org/10.1097/NNA.0b013e3181bd61ac.

Evridiki Papastavrou, E., Charalambous, A., Vryonides, S., Eleftheriou, C., Merkouris, A (2016). To what extent are patients' needs met on oncology units? The phenomenon of care rationing. European Journal of Oncology Nursing 21: 48e56.

February 2016: More discovery in the links between Obesity and Cancer

The link between incidence of colorectal cancer and obesity is well established though understanding the mechanisms behind this is not well known. There is evidence that a diet rich in processed meats, which contain the potentially cacogenic compound nitrates, increases bowel cancer risk. However it is unclear why other high-calorie diets also increase risk. A recent publication in Cancer Research (see ref below) has reported the findings of a team of scientists at Thomas Jefferson University led by Dr Scott Waldman which show that overeating deactivates a tumour suppressor pathway allowing colon tumours to form. It is thought further research may lead to hormone replacement therapy which could thus prevent colon cancer.

This latest study, conducted in genetically engineered mice, found that obesity caused by a diet rich in fats or carbohydrates ‘silenced’ a hormone called guanylin. This, in turn, led to a turning off of a receptor called guanylyl cyclase C (GUCY2C) found on cells that line the bowel. Turning off this receptor was associated with tumour growth, as the GUCY2C receptor, when working properly, is designed to prevent abnormal cell growth. Once this was established, further work showed that using a drug to increase the production of guanylin reversed the effects of the high-calorie diet and prevented tumour growth. Although this is a very exciting discovery, caution needs to be taken as this was an animal study and it cant be assumed that the findings are transferable. However the study does provide a route to look at ways this may apply to humans.

J. E. Lin, F. Colon-Gonzalez, E. Blomain, G. W. Kim, A. Aing, B. Stoecker, J. Rock, A. E. Snook, T. Zhan, T. M. Hyslop, M. Tomczak, R. S. Blumberg, S. A. Waldman. Obesity-Induced Colorectal Cancer Is Driven by Caloric Silencing of the Guanylin-GUCY2C Paracrine Signaling Axis. Cancer Research, 2016; 76 (2): 339 DOI: 10.1158/0008-5472.CAN-15-1467-T

January 2016: Information power: A new concept for sample size calculations in qualitative studies"

How many subjects should a research project have to be considered valid? It depends on many factors, as Dr Lena Sharp of the Research Working Group explains.

The concept ‘saturation’ is often used to justify the number of subjects included in qualitative studies. The concept was developed specifically for Grounded Theory research, where new data is compared with already analyzed data to identify similarities and differences until saturation is being reached and no more data is needed.

A group of senior Scandinavian qualitative researchers state in a recent methodology paper (1) that new tools are needed to calculate sample size in qualitative studies. Malterud et al (2015) argue that saturation is inappropriately used in many studies and that it is often difficult to follow what saturation was based on. The authors have developed a new concept, Information Power, as an alternative to saturation for qualitative research. Large information power needs a smaller samples and small information power requires a larger samples.

The authors describe how the following five items have an impact on Information Power.

1Study aimA broad aim requires larger samples and a more narrow and very specific aim requires a smaller sample
2SpecificityIf the respondents in a study are very specific for the study sample, a smaller sample is needed and vice versa
3TheoryStudies with strong theoretical background needs smaller samples
4DialogueA study with strong and focused dialogue between study participants and researchers need smaller samples compared with studies with a weaker or unfocused dialogue
5AnalysisCross-case analysis needs more participants than in-depth analysis of fewer cases

Information Power is interesting and new models for sample size calculations are needed in qualitative research. However, some of the factors described above are difficult to decide and plan before the study started. You still need an estimated sample size when you apply for grants, for instance. The authors of the study don’t offer any guidance on how many participants make a “large” or a “small” sample, even if they point out that qualitative researchers should avoid using too large or too small samples.

1. Malterud K, Siersma VD, Guassora AD. Sample Size in Qualitative Interview Studies: Guided by Information Power. Qual Health Res. 2015 Nov 27. pii: 1049732315617444. [Epub ahead of print]


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