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

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

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. 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.

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.

EBM, heart failure, heart failure treatment, quality of care and outcomes
2053-3624
Huntley, Alyson L
7cd4b2ee-2e14-408d-ad5e-0391877ff9cb
Burden, John
a067a74b-bb2e-4cce-a457-3add94d75851
Gadoud, Amy
2aab1074-9b12-4937-b0db-ffef53e45d9a
Gronlund, Toto
2ba578ff-c07e-499b-a45b-3fdf104b421c
Jones, Nicholas Robert
1c7d4eff-8c2b-486a-bf4e-7ffb0d1cd240
Wicks, Eleanor
472d4466-0ae2-4e1f-af52-d79b91ff6ff2
McKelvie, Sara
61c92fa0-fa9f-4d59-988d-6e669d8f8f32
Byatt, Kit
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Lehman, Richard
71ab663b-74e0-4bcc-8ddd-f7eaddf56386
King, Anna
21be4a72-a473-4608-a2c1-0bec1651171f
Mumford, Bev
525be7a5-aa04-47f5-8f84-7323884e0baa
Feder, Gene
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Mant, Jonathan
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Hobbs, Richard
53697ca3-615a-4c51-8452-b703a12f2faf
Johnson, Rachel
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Huntley, Alyson L
7cd4b2ee-2e14-408d-ad5e-0391877ff9cb
Burden, John
a067a74b-bb2e-4cce-a457-3add94d75851
Gadoud, Amy
2aab1074-9b12-4937-b0db-ffef53e45d9a
Gronlund, Toto
2ba578ff-c07e-499b-a45b-3fdf104b421c
Jones, Nicholas Robert
1c7d4eff-8c2b-486a-bf4e-7ffb0d1cd240
Wicks, Eleanor
472d4466-0ae2-4e1f-af52-d79b91ff6ff2
McKelvie, Sara
61c92fa0-fa9f-4d59-988d-6e669d8f8f32
Byatt, Kit
4452da4a-35d7-47b9-8d22-10223302b8b3
Lehman, Richard
71ab663b-74e0-4bcc-8ddd-f7eaddf56386
King, Anna
21be4a72-a473-4608-a2c1-0bec1651171f
Mumford, Bev
525be7a5-aa04-47f5-8f84-7323884e0baa
Feder, Gene
0fba983e-5a70-4280-99af-69811d2d6a56
Mant, Jonathan
0d1a0061-0f04-45c7-b20a-15798b1f465c
Hobbs, Richard
53697ca3-615a-4c51-8452-b703a12f2faf
Johnson, Rachel
d17a1d3f-6229-45d4-953b-0043c09011de

Huntley, Alyson L, Burden, John, Gadoud, Amy, Gronlund, Toto, Jones, Nicholas Robert, Wicks, Eleanor, McKelvie, Sara, Byatt, Kit, Lehman, Richard, King, Anna, Mumford, Bev, Feder, Gene, Mant, Jonathan, Hobbs, Richard and Johnson, Rachel (2020) Research priorities in advanced heart failure: James Lind alliance priority setting partnership. Open Heart, 7 (1). (doi:10.1136/openhrt-2020-001258).

Record type: Article

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. 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.

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.

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More information

Accepted/In Press date: 21 April 2020
e-pub ahead of print date: 30 June 2020
Published date: June 2020
Additional Information: © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Keywords: EBM, heart failure, heart failure treatment, quality of care and outcomes

Identifiers

Local EPrints ID: 445709
URI: http://eprints.soton.ac.uk/id/eprint/445709
ISSN: 2053-3624
PURE UUID: b4e56173-cdde-4cc9-8733-4ac9ffdd1d7a
ORCID for Sara McKelvie: ORCID iD orcid.org/0000-0003-3781-9813

Catalogue record

Date deposited: 06 Jan 2021 17:41
Last modified: 13 Dec 2021 03:39

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Contributors

Author: Alyson L Huntley
Author: John Burden
Author: Amy Gadoud
Author: Toto Gronlund
Author: Nicholas Robert Jones
Author: Eleanor Wicks
Author: Sara McKelvie ORCID iD
Author: Kit Byatt
Author: Richard Lehman
Author: Anna King
Author: Bev Mumford
Author: Gene Feder
Author: Jonathan Mant
Author: Richard Hobbs
Author: Rachel Johnson

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