Research priorities in advanced heart failure: James Lind alliance priority setting partnership

Abstract

ObjectiveTo determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.MethodsPriority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents’ questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a ‘top 10’.Results192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.ConclusionsEngaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

Pediatric and child health nursing: A three-phase research priority setting study in Western Australia

“…The final top ten research priorities were decided in agreement between consumers and nurses resulting in a combined agreed priority list, an achievement that has not always been possible when targeting both groups at the same time (Taylor et al, 2020;Tume et al, 2020). 'Access to service' was the highest ranked theme.…”

Long term changes in health‐related quality of life for people with heart failure: the ECHOES study

“…For many patients with HF, the quality of daily living may be more important than the length of life 31 . In a recent James Lind Alliance Priority Setting Partnership, the number one research priority set by patients, carers, and clinicians was ‘identification of treatments that have the biggest impact on QoL of people with advanced heart failure’ 32 …”

“…31 In a recent James Lind Alliance Priority Setting Partnership, the number one research priority set by patients, carers, and clinicians was 'identification of treatments that have the biggest impact on QoL of people with advanced heart failure'. 32 In more recent studies, improvements in KCCQ clinical and total summary scores have been reported, alongside clinical outcomes, including the large HFrEF trials of sacubitril/ valsartan, 33 dapagliflozin, 27 and empagliflozin. 26 Within-study comparisons of generic and disease-specific HRQoL tools are also being undertaken.…”

Patient‐reported outcome measures and patient engagement in heart failure clinical trials: multi‐stakeholder perspectives

“…The priorities and expectations of patients and clinicians often differ. Clinicians frequently are more concerned with cardiac anatomy and physiology, reducing mortality, and specific management issues, while patients just wish to feel better 28,35 . However, both clinicians and patients generally assign high priority to improving HRQoL.…”