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. Fir... Mehr ...

Verfasser: 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
Schoemaker, Casper G.
Dokumenttyp: Artikel
Erscheinungsdatum: 2021
Reihe/Periodikum: Verwoerd , A , Armbrust , W , Cowan , K , van den Berg , L , de Boer , J , Bookelman , S , Britstra , M , Cappon , J , Certan , M , Dedding , C , van den Haspel , K , Muller , P H , Jongsma , K , Lelieveld , O , van Loosdregt , J , Olsder , W , Rocha , J , Schatorjé , E , Schouten , N , Swart , J F , Vastert , S , Walter , M & Schoemaker , C G 2021 , ' Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis ' , Pediatric Rheumatology , vol. 19 , no. 1 , 52 . https://doi.org/10.1186/s12969-021-00540-2
Schlagwörter: James Lind Alliance / Juvenile idiopathic arthritis / Patient involvement / Research priority setting
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-27449806
Datenquelle: BASE; Originalkatalog
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Link(s) : https://research.tue.nl/en/publications/f9626241-2f3a-4d75-b408-f2085a1d9495