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Patients want to be involved in end-of-life care research
  1. Amara Callistus Nwosu1,
  2. Catriona R Mayland1,
  3. Stephen Mason1,
  4. Andrea Varro2 and
  5. John E Ellershaw1
  1. 1Marie Curie Palliative Care Institute Liverpool (MCPCIL), University of Liverpool, Liverpool, UK
  2. 2Institute of Translational Medicine, University of Liverpool, Liverpool, UK
  1. Correspondence to Dr Amara Callistus Nwosu, Marie Curie Palliative Care Institute Liverpool (MCPCIL), Department of Molecular & Clinical Cancer Medicine, Cancer Research Centre, University of Liverpool, 200 London Rd, Liverpool L3 9TA, UK; amaranwosu@doctors.org.uk

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Advances in multimodal cancer-directed treatment have improved survival for metastatic cancer patients. In the Western world the combination of various demographic, health-related and sociological factors will contribute to increased comorbidities and mortality over the next decade. A careful, evidence-based approach is necessary to address the inevitable challenges, which will be posed by an increasingly aged population that will require supportive care towards the end of their lives.1 Further investment in palliative care research is required to generate the evidence which will improve the care delivered to patients approaching death.2 Currently, funding for end-of-life and palliative care research is inadequate. Data on UK research funding by National Cancer Research Institute partners in 2010 show that just 0.24% was allocated to palliative and end-of-life care research. Similarly, in 2010 the US National Cancer Institute only awarded 1% its funding to palliative care research.2

Research involving patients who are approaching death is methodologically and ethically challenging. This group of patients often have a significant symptomatic burden, including pain, fatigue and psychological distress. Researchers may struggle to engage and recruit participants due to concerns about the ability of patients to comply with assessments and provide consent. Consequently, low levels of recruitment, small sample sizes and high attrition rates often have a deleterious impact on the methodological quality of research.3 However, there is developing evidence which demonstrates that patients are keen to be involved in palliative care research.4

In light of these issues, we report the preliminary results of a pilot study using bioelectrical impedance analysis to assess hydration states in advanced cancer inpatients based within a specialist palliative care unit within Liverpool, UK. Participating patients are assessed using bioelectrical impedance analysis, undergo a clinical examination and complete a self-reported symptom questionnaire. Since December 2012, of the 80 eligible patients, 78 (97.5%) agreed to discuss the study with the researcher, with 61 (76.3%) providing consent for study participation. Eleven (13.7%) patients agreed to take part initially but were too ill at time of assessment. Two (2.5%) were discharged prior to study assessments; so far, only six patients (7.5%) have declined to participate in the study. As in other published research, all enrolled patients stated a desire to help others as a motivating factor for participating in the research study.4

In line with the published literature, our experience within this study suggests that palliative care patients are keen to be involved in research and that their experience is positive.5 Our data suggest that a good level of recruitment to studies involving palliative patients is possible. This is noteworthy, as patients in specialist palliative care units are more likely to have more advanced disease and symptom burden compared to those within general medical and oncology units. Researchers, funders and policy makers should be encouraged, as patient participation in research will help to identify and address patient-centred priorities at the end of life.

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Footnotes

  • Contributors All authors of this letter have directly participated in its drafting. All authors of this letter have read and approved the final version submitted.

  • Funding The ‘Friends of the University of Liverpool’ has provided funding, to the sum of £10,000, to cover equipment costs and running costs attributable to the study.

  • Competing interests None.

  • Ethics approval This study received a favorable ethical opinion from the North Wales Research Ethics Committee—West in 2012.

  • Provenance and peer review Not commissioned; internally peer reviewed.