Background Patients with advanced heart failure have a significant symptom burden and a range of palliative care needs but these are often unmet. Research priorities have traditionally been set by funders and researchers and focus on active treatment and palliative care research is not prioritised. Involving patients in the process can lead to more valid, credible and relevant research findings. This project sets out to establish shared research priorities for advanced heart failure from the patient, carer and clinician perspective, as a James Lind Alliance partnership.
Methods A steering group of people directly affected by advanced heart failure including patients, carers and clinicians is overseeing the project. The results of an initial online survey of priorities are presented here. A review of the literature will be carried out to identify where priorities have already been addressed, and where gaps exist. Submitted priorities will be sorted by a second online survey to generate a shorter list for discussion at a final workshop in early 2019, where a ‘Top Ten’’ will be agreed. The ‘Top Ten’ will be disseminated widely to researchers and funders to influence the advanced heart failure research agenda.
Results Preliminary results of the online survey of 180 participants has demonstrated palliative research questions are a priority for this group. Themes include planning for the future, coordination of care, communication and supporting family members and carers. Comorbidity was recognised as common. Symptom control was also prioritised, including symptoms under-recognised by clinicians such as fatigue, and psychological issues like depression, loneliness and poor cognition.
Conclusion Preliminary results indicate new insight into what matters to people and what they would like to see researched. The palliative care research community should be ready to take up the challenge of exploring these unanswered questions.
Funding NIHR School of Primary Care Research.
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