Final published version, 3 MB, PDF document
Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Final published version
Licence: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
TY - JOUR
T1 - Research priorities in advanced heart failure: James Lind alliance priority setting partnership
AU - Taylor, Clare
AU - Huntley, Alyson L.
AU - Burden, John
AU - Gadoud, Amy
AU - Gronlund, Toto
AU - Jones, Nicholas Roberts
AU - Wicks, Eleanor
AU - McKelvie, Sara
AU - Byatt, Kit
AU - Lehman, Richard
AU - King, Anna
AU - Mumford, Bev
AU - Feder, Gene
AU - Mant, Jonathan
AU - Hobbs, Richard
AU - Johnson, Rachel
PY - 2020/6/30
Y1 - 2020/6/30
N2 - 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 ofpatients, 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-faceworkshop 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.
AB - 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 ofpatients, 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-faceworkshop 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.
U2 - 10.1136/openhrt-2020-001258
DO - 10.1136/openhrt-2020-001258
M3 - Journal article
VL - 7
JO - BMJ Open Heart
JF - BMJ Open Heart
SN - 2053-3624
IS - 1
M1 - e001258
ER -