Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis
Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis
Background: involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.
Methods: the James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.
Results: two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.
Conclusions: through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.
James Lind Alliance, Juvenile idiopathic arthritis, Patient involvement, Research priority setting
52
Verwoerd, Anouk
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Armbrust, Wineke
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Cowan, Katherine
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van den Berg, Lotte
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de Boer, Joke
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Bookelman, Sanne
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Britstra, Marjan
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Cappon, Jeannette
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Certan, Maria
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Dedding, Christine
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van den Haspel, Karin
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Muller, Petra Hissink
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Jongsma, Karin
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Lelieveld, Otto
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van Loosdregt, Jorg
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Olsder, Wendy
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Rocha, Johanna
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Schatorjé, Ellen
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Schouten, Natasja
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Swart, Joost F.
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Vastert, Sebastiaan
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Walter, Margot
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Schoemaker, Casper G.
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7 April 2021
Verwoerd, Anouk
4f3e4b7b-675a-4ed4-8234-700c2c61be84
Armbrust, Wineke
a24658ef-62ad-43ff-a75b-003c9c35a9f4
Cowan, Katherine
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van den Berg, Lotte
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de Boer, Joke
5492f0c7-741d-4bc8-903d-6c245c340b27
Bookelman, Sanne
87900cc1-c1be-497f-bd15-125bd6f308b0
Britstra, Marjan
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Cappon, Jeannette
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Certan, Maria
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Dedding, Christine
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van den Haspel, Karin
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Muller, Petra Hissink
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Jongsma, Karin
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Lelieveld, Otto
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van Loosdregt, Jorg
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Olsder, Wendy
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Rocha, Johanna
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Schatorjé, Ellen
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Schouten, Natasja
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Swart, Joost F.
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Vastert, Sebastiaan
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Walter, Margot
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Schoemaker, Casper G.
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Verwoerd, Anouk, Armbrust, Wineke, Cowan, Katherine, van den Berg, Lotte, de Boer, Joke, Bookelman, Sanne, Britstra, Marjan, Cappon, Jeannette, Certan, Maria, Dedding, Christine, van den Haspel, Karin, Muller, Petra Hissink, Jongsma, Karin, Lelieveld, Otto, van Loosdregt, Jorg, Olsder, Wendy, Rocha, Johanna, Schatorjé, Ellen, Schouten, Natasja, Swart, Joost F., Vastert, Sebastiaan, Walter, Margot and Schoemaker, Casper G.
(2021)
Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis.
Pediatric Rheumatology, 19 (1), , [52].
(doi:10.1186/s12969-021-00540-2).
Abstract
Background: involving the end-users of scientific research (patients, carers and clinicians) in setting research priorities is important to formulate research questions that truly make a difference and are in tune with the needs of patients. We therefore aimed to generate a national research agenda for Juvenile Idiopathic Arthritis (JIA) together with patients, their caregivers and healthcare professionals through conducting a nationwide survey among these stakeholders.
Methods: the James Lind Alliance method was used, tailored with additional focus groups held to involve younger patients. First, research questions were gathered through an online and hardcopy survey. The received questions that were in scope were summarised and a literature search was performed to verify that questions were unanswered. Questions were ranked in the interim survey, and the final top 10 was chosen during a prioritisation workshop.
Results: two hundred and seventy-eight respondents submitted 604 questions, of which 519 were in scope. Of these 604 questions, 81 were generated in the focus groups with younger children. The questions were summarised into 53 summary questions. An evidence checking process verified that all questions were unanswered. A total of 303 respondents prioritised the questions in the interim survey. Focus groups with children generated a top 5 of their most important questions. Combining this top 5 with the top 10s of patients, carers, and clinicians led to a top 21. Out of these, the top 10 research priorities were chosen during a final workshop. Research into pain and fatigue, personalised treatment strategies and aetiology were ranked high in the Top 10.
Conclusions: through this study, the top 10 research priorities for JIA of patients, their caregivers and clinicians were identified to inform researchers and research funders of the research topics that matter most to them. The top priority involves the treatment and mechanisms behind persisting pain and fatigue when the disease is in remission.
Text
s12969-021-00540-2
- Version of Record
More information
Accepted/In Press date: 23 March 2021
e-pub ahead of print date: 7 April 2021
Published date: 7 April 2021
Additional Information:
Funding Information:
This project was funded by the Dutch Association for Paediatric Rheumatology (NVKR), the Dutch JIA Patient and Parent Organisation (JVN) and Wilhelmina Children’s Hospital. PGO support funded the ethical process evaluation.
Publisher Copyright:
© 2021, The Author(s).
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
Keywords:
James Lind Alliance, Juvenile idiopathic arthritis, Patient involvement, Research priority setting
Identifiers
Local EPrints ID: 450694
URI: http://eprints.soton.ac.uk/id/eprint/450694
PURE UUID: 854a22ee-5ba7-4a97-848f-604ebc4ec24d
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Date deposited: 06 Aug 2021 16:31
Last modified: 15 Apr 2024 17:11
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Contributors
Author:
Anouk Verwoerd
Author:
Wineke Armbrust
Author:
Katherine Cowan
Author:
Lotte van den Berg
Author:
Joke de Boer
Author:
Sanne Bookelman
Author:
Marjan Britstra
Author:
Jeannette Cappon
Author:
Maria Certan
Author:
Christine Dedding
Author:
Karin van den Haspel
Author:
Petra Hissink Muller
Author:
Karin Jongsma
Author:
Otto Lelieveld
Author:
Jorg van Loosdregt
Author:
Wendy Olsder
Author:
Johanna Rocha
Author:
Ellen Schatorjé
Author:
Natasja Schouten
Author:
Joost F. Swart
Author:
Sebastiaan Vastert
Author:
Margot Walter
Author:
Casper G. Schoemaker
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