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

Research output: Contribution to journalJournal articlepeer-review

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  • Clare Taylor
  • Alyson L. Huntley
  • John Burden
  • Amy Gadoud
  • Toto Gronlund
  • Nicholas Roberts Jones
  • Eleanor Wicks
  • Sara McKelvie
  • Kit Byatt
  • Richard Lehman
  • Anna King
  • Bev Mumford
  • Gene Feder
  • Jonathan Mant
  • Richard Hobbs
  • Rachel Johnson
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Article numbere001258
<mark>Journal publication date</mark>30/06/2020
<mark>Journal</mark>BMJ Open Heart
Issue number1
Volume7
Number of pages9
Publication StatusPublished
<mark>Original language</mark>English

Abstract

Objective To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.

Methods Priority 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’.

Results 192 respondents submitted 489 responses each containing one or more research uncertainty. Outof-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.

Conclusions Engaging 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.