School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, Block 97 Health Sciences, 97 Lisburn Road, Belfast BT9 7BL, UK; All Ireland Institute of Hospice and Palliative Care, Ireland There is a paucity of research studies in palliative care with less than 1% of clinical trials being relevant to the hospice and palliative care setting.
School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, Block 97 Health Sciences, 97 Lisburn Road, Belfast BT9 7BL, UKUnited Kingdom
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There is a paucity of research studies in palliative care with less than 1% of clinical trials being relevant to the hospice and palliative care setting.1 Difficulties in conducting studies with this client group such as recruitment, retention, methodological and ethical issues are well documented within the literature.
Editorial Challenges in Palliative Care Research: * *Corresponding author Experience from a Randomized Joanne Reid Lecturer in Cancer Nursing School of Nursing and Midwifery Controlled Trial in Refractory Cancer Queen’s University Belfast Room 06.312, Medical Biology Centre Cachexia Block 97 Health Sciences 97 Lisburn Road Belfast BT9 7BL, UK 1,2* 1 1,2 Tel. 00442890972459 Joanne Reid , David Scott and Sam Porter E-mail: j.reid@qub.ac.uk 1School of Nursing and Midwifery, Queen’s University Belfast, Medical Biology Centre, Block Volume 1 : Issue 2 97 Health Sciences, 97 Lisburn Road, Belfast BT9 7BL, UK Article Ref. #: 1000PMHCOJ1e001 2All Ireland Institute of Hospice and Palliative Care, Ireland Article History nd Received: April 2nd, 2015 rd Accepted: April 3rd, 2015 There is a paucity of research studies in palliative care with less than 1% of clinical th Published: April 6th, 2015 trials being relevant to the hospice and palliative care setting.1 Difficulties in conducting studies with this client group such as recruitment, retention, methodological and ethical issues are well 1,2-6 documented within the literature. Nonetheless, conducting research with palliative popula- Citation Reid J, Scott D, Porter S. Chal- tions is necessary to ensure the development of evidence based policies and services which lenges in palliative care research: reflect and respond to the needs of this vulnerable and often underserved population. Previous experience from a randomized 7,8 9 research has demonstrated that palliative care patients and their families are willing to be controlled trial in refractory can- cer cachexia. Palliat Med Hosp involved in palliative care research and the onus to conduct high quality rigorous research with Care Open J. 2015; 1(2): e1-e3.
this client group lies with researchers. It is only through actively engaging in research with the doi: 10.17140/PMHCOJ-1-e001 palliative population that we can build an evidence base that will contribute to the development of evidence based policies, protocols and treatments and allow health care professionals to consistently respond to palliative patients and their families in order to maximise their quality of life as they approach the end of their lives.
One of the areas in which this paucity of systematic research has had a detrimental effect on the care of palliative patients is cachexia. The European Palliative Care Research Col- laborative’s (EPCRC) guidelines11 on cancer cachexia define it as a multi-factorial syndrome characterised “by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support” (p. 8). Refractory cachexia11 refers to the ‘stage where reversal of weight loss seems no longer possible’ (p. 8) and the major- ity of patients at this stage will be receiving palliative care. Previous research in this area has 12-15 demonstrated the holistic impact of the syndrome.
Research in palliative care, has been dogged by recruitment problems.1 Our own re- search has faced similar problems. In the absence of a recognized treatment solution, an ev- idence-based psycho-educational health care intervention has been developed for this patient cohort and their family members by a team of researchers and healthcare staff in Northern Ireland. This DVD intervention has been funded by the All Ireland Institute of Hospice and Palliative Care and will be evaluated in a randomized controlled trial with a palliative cancer population who have refractory cachexia.16 The team’s experience thus far highlights the inher- ent difficulties in conducting research with this client group.
Copyright ©2015 Reid J. This is an open ac- cess article distributed under the Members of our team have worked closely alongside multidisciplinary clinical col- Creative Commons Attribution 4.0 leagues and have engaged in Patient Public Involvement (PPI) from the early stages of the de- International License (CC BY 4.0), velopment of the intervention. Their insights were instrumental in: developing the intervention which permits unrestricted use, and study information sheets; and ensuring the clinical soundness and practical utility of the distribution, and reproduction in any medium, provided the original psycho-educational intervention. However, our problems with recruitment lie in the fact that 17 11 refractory cancer cachexia, while characterized17 and documented in the EPCRC’s guidelines11 is rarely acknowledged or diagnosed due to a lack of clear clinical diagnostic guidelines and local protocols for clinical management. This reluctance to recognise and diagnose cancer cachexia among the myriad of potential co-morbidities found in end-of-life care has hindered identification of po- tential participants. Indeed previous research has demonstrated the lack of clinical awareness of this syndrome among health care professionals.18 While the authors have taken the initiative by: conducting educational sessions on refractory cachexia with health care staff at each clinical site; have harnessed clinical support for the study; and have worked at length with both clinical and PPI colleagues, recruitment into this study has been disappointing.
In order to positively influence clinical practice in palliative care, health care professionals need access to ‘best available evidence’. As this and as other studies in palliative care demonstrate, acquiring evidence from this client group presents a great challenge. There is a clear need for the urgent development of evidence based guidelines to aid in the education, diagnosis and man- agement of refractory cancer cachexia. Such guidelines will undoubtedly provide the clinical diagnostic criteria necessary to assist healthcare professionals in identifying refractory cachexia and allow them to respond appropriately. This in turn will make it easier to identify and recruit appropriate patients for future studies in palliative care.