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Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method
- Source :
- Pediatric Rheumatology, 16, 1, pp. 57, Pediatric Rheumatology, 16(1). BioMed Central, Schoemaker, C G, Armbrust, W, Swart, J F, Vastert, S J, Van Loosdregt, J, Verwoerd, A, Whiting, C, Cowan, K, Olsder, W, Versluis, E, Van Vliet, R, Fernhout, M J, Bookelman, S L, Cappon, J, Van Den Berg, J M, Schatorjé, E, Muller, P C E H, Kamphuis, S, De Boer, J, Lelieveld, O T H M, Van Der Net, J, Jongsma, K R, Van Rensen, A, Dedding, C & Wulffraat, N M 2018, ' Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method : A study protocol ', Pediatric Rheumatology, vol. 16, no. 1, 57 . https://doi.org/10.1186/s12969-018-0276-3, Pediatric Rheumatology, 16(1):57. BioMed Central Ltd., Pediatric Rheumatology, 16, 57, Pediatric Rheumatology Online Journal, Vol 16, Iss 1, Pp 1-5 (2018)
- Publication Year :
- 2018
-
Abstract
- Contains fulltext : 200061.pdf (Publisher’s version ) (Open Access) 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.
- Subjects :
- Research design
lcsh:Diseases of the musculoskeletal system
Biomedical Research
genetic structures
Research agenda
Juvenile/therapy
Biomedical Research/methods
Pediatrics
0302 clinical medicine
Medicine
Immunology and Allergy
030212 general & internal medicine
Cooperative Behavior
Child
skin and connective tissue diseases
health care economics and organizations
Netherlands
Consulting room
Priority setting
lcsh:RJ1-570
Focus Groups
Perinatology
and Child Health
Caregivers
Research Design
General partnership
Research questions
James Lind Alliance
Inflammatory diseases Radboud Institute for Molecular Life Sciences [Radboudumc 5]
musculoskeletal diseases
Adolescent
Decision Making
03 medical and health sciences
Nursing
Rheumatology
Physicians
Humans
Pediatrics, Perinatology, and Child Health
Patient involvement
030203 arthritis & rheumatology
Protocol (science)
business.industry
Arthritis
Juvenile Idiopathic Arthritis (JIA)
lcsh:Pediatrics
Patient Participation/methods
Focus group
Arthritis, Juvenile
eye diseases
Alliance
Pediatrics, Perinatology and Child Health
lcsh:RC925-935
Patient Participation
business
Subjects
Details
- Language :
- English
- ISSN :
- 15460096
- Volume :
- 16
- Issue :
- 1
- Database :
- OpenAIRE
- Journal :
- Pediatric Rheumatology
- Accession number :
- edsair.doi.dedup.....828e39b2562f263bcb1a6042fc9e6751