Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: A study protocol

Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Main body: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top... Mehr ...

Verfasser: Schoemaker, Casper G.
Armbrust, Wineke
Swart, Joost F.
Vastert, Sebastiaan J.
Van Loosdregt, Jorg
Verwoerd, Anouk
Whiting, Caroline
Cowan, Katherine
Olsder, Wendy
Versluis, Els
Van Vliet, Rens
Fernhout, Marlous J.
Bookelman, Sanne L.
Cappon, Jeannette
Van Den Berg, J. Merlijn
Schatorjé, Ellen
Muller, Petra C.E.Hissink
Kamphuis, Sylvia
De Boer, Joke
Lelieveld, Otto T.H.M.
Van Der Net, Janjaap
Jongsma, Karin R.
Van Rensen, Annemiek
Dedding, Christine
Wulffraat, Nico M.
Dokumenttyp: Artikel
Erscheinungsdatum: 2018
Schlagwörter: James Lind Alliance / Juvenile Idiopathic Arthritis (JIA) / Patient involvement / Research agenda / Pediatrics / Perinatology / and Child Health / Rheumatology / Immunology and Allergy
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-29455121
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://dspace.library.uu.nl/handle/1874/373749

Background: Research on Juvenile Idiopathic Arthritis (JIA) should support patients, caregivers/parents (carers) and clinicians to make important decisions in the consulting room and eventually to improve the lives of patients with JIA. Thus far these end-users of JIA-research have rarely been involved in the prioritisation of future research. Main body: Dutch organisations of patients, carers and clinicians will collaboratively develop a research agenda for JIA, following the James Lind Alliance (JLA) methodology. In a 'Priority Setting Partnership' (PSP), they will gradually establish a top 10 list of the most important unanswered research questions for JIA. In this process the input from clinicians, patients and their carers will be equally valued. Additionally, focus groups will be organised to involve young people with JIA. The involvement of all contributors will be monitored and evaluated. In this manner, the project will contribute to the growing body of literature on how to involve young people in agenda setting in a meaningful way. Conclusion: A JIA research agenda established through the JLA method and thus co-created by patients, carers and clinicians will inform researchers and research funders about the most important research questions for JIA. This will lead to research that really matters.