ArticleRMD open2021
Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force.
Article in RMD open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 15 citations in OpenAlex.
- Economic impact of Juvenile Idiopathic Arthritis: a systematic review.Pediatric rheumatology online journal · 2021Pooled it
- TESS 2.0-Adaptation of the German Version of the Toronto Extremity Salvage Score: Addition of an Item Regarding the Use of a Touchscreen and Keyboard in the Upper Extremity Questionnaire.Journal of clinical medicine · 2026Article
- The Challenging Management of Rheumatoid Arthritis Overlapping With Graves' Disease in a Young Male: A Case Report.Clinical case reports · 2025Article
- Stakeholder outcome prioritization in the Biologic Abatement and Capturing Kids' Outcomes and Flare Frequency in Juvenile Spondyloarthritis (BACK-OFF JSpA) trial.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Current Validated Clinical and Patient Reported Disease Outcome Measures in Juvenile Idiopathic Arthritis.Open access rheumatology : research and reviews · 2023Review
- The Your Rheum story: involvement of young people in rheumatology research.BMC rheumatology · 2022Article
- Article
- The value of the patient global health assessment in polyarticular juvenile idiopathic arthritis: a nested cohort study.Journal of patient-reported outcomes · 2021Article
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Authors and funding
14 authors at 9 institutions in 8 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionAlthough patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.
methodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still's disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18-35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.
resultsFifty-three patients (21 with RA/JIA/Still's, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.
conclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.
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