Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis

Verwoerd, Anouk; Armbrust, Wineke; Cowan, Katherine; Berg, Lotte van den; Boer, Joke de; Bookelman, Sanne; Britstra, Marjan; Cappon, Jeannette; Certan, Maria; Dedding, Christine; Haspel, Karin van den; Müller, Petra; Jongsma, Karin; Lelieveld, Otto; Loosdregt, Jorg van; Olsder, Wendy; Rocha, Johanna; Schatorjé, Ellen; Schouten, Natasja; Swart, Joost F.; Vastert, Sebastiaan J.; Walter, Margot; Schoemaker, Casper

doi:10.21203/rs.3.rs-59431/v1

Cited by 1 publication

(1 citation statement)

References 12 publications

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“…Limitations include the lack of inclusion of other stakeholders including consumers, industry representatives and policy makers. As observed in other studies, inclusion of these groups may affect these priorities [ 21 ]. Given the anonymous nature of the data collection, we were unable to determine if there were important differences in clinician priorities based on practice settings, be that urban or regional.…”

Section: Discussionmentioning

confidence: 90%

Modified Delphi study to identify priority clinical questions for the Australian living guidelines for the management of Juvenile Idiopathic Arthritis

et al. 2022

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Background Juvenile Idiopathic Arthritis (JIA) is the most common rheumatic inflammatory disease in childhood. Optimal management requires clinicians to be up to date with the rapidly evolving evidence base. ‘Living’ evidence-based clinical practice guidelines, which integrate new evidence as soon as it is available, are a novel method to enhance the translation of research into practice. To determine the most relevant questions that should be prioritised in national Australian JIA living guidelines, we invited Australian and New Zealand paediatric rheumatologists and other relevant health professionals to identify and rank their most important questions in order of priority. Methods All 47 members of the Australian Paediatric Rheumatology Group (APRG) were invited to participate in a modified Delphi study comprising two rounds. The first round identified demographic information of respondents, current attitudes to guideline use and invited submission of priority management questions. The second round asked respondents to rank 27 collated and refined questions identified in round one in order of priority. Results There were 29 (62%) and 28 (60%) responses to the first and second survey rounds respectively. About two thirds were rheumatologists or trainees (66, 68%), nearly half had more than 10 years of experience (45, 46%) and practice setting was largely hospital (79, 86%) and urban (86, 75%). Most respondents used clinical guidelines in their practice (72% sometimes, 24% often), most frequently American College of Rheumatology (ACR) (66%) and European Alliance of Associations for Rheumatology (EULAR) (59%) guidelines. Reported barriers to guideline use included that they are not up to date and access difficulties. Most respondents (83%) considered Australian guidelines were necessary and two-thirds indicated they would use them if integrated into practice software. The highest ranked topics were down-titration and discontinuation of disease modifying anti-rheumatic drugs (ranked first), best outcome measures (second) and treatment targets in JIA (third). Conclusions There is strong clinician support for the development of Australian living guidelines for JIA. Consensus was reached on the ten top-ranked priority questions. Our guidelines will develop evidence-based recommendations for these high priority questions that will be updated in real time as needed to facilitate rapid translation of evidence into clinical practice.

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Section: Discussionmentioning

confidence: 90%