TY - JOUR
T1 - Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis
AU - Verwoerd, Anouk
AU - Armbrust, Wineke
AU - Cowan, Katherine
AU - van den Berg, Lotte
AU - de Boer, Joke
AU - Bookelman, Sanne
AU - Britstra, Marjan
AU - Cappon, Jeannette
AU - Certan, Maria
AU - Dedding, Christine
AU - van den Haspel, Karin
AU - Muller, Petra Hissink
AU - Jongsma, Karin
AU - Lelieveld, Otto
AU - van Loosdregt, Jorg
AU - Olsder, Wendy
AU - Rocha, Johanna
AU - Schatorjé, Ellen
AU - Schouten, Natasja
AU - Swart, Joost F.
AU - Vastert, Sebastiaan
AU - Walter, Margot
AU - Schoemaker, Casper G.
N1 - 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.
PY - 2021/12/1
Y1 - 2021/12/1
N2 - 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.
AB - 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.
KW - James Lind Alliance
KW - Juvenile idiopathic arthritis
KW - Patient involvement
KW - Research priority setting
UR - http://www.scopus.com/inward/record.url?scp=85103997615&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12969-021-00540-2
DO - https://doi.org/10.1186/s12969-021-00540-2
M3 - Article
C2 - 33827608
SN - 1546-0096
VL - 19
JO - Pediatric Rheumatology
JF - Pediatric Rheumatology
IS - 1
M1 - 52
ER -