ArticlePediatric rheumatology online journal2018
Comparing the importance of quality measurement themes in juvenile idiopathic inflammatory myositis between patients and families and healthcare professionals.
Article in Pediatric rheumatology online journal, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
8 citing papers in PubMed, 11 citations in OpenAlex.
- A test of a conceptual model of uncertainty, benefit and burden in children and young people with juvenile dermatomyositis.Rheumatology advances in practice · 2026Article
- Psychometric properties of patient-reported outcomes measurement information system (PROMIS) fixed short forms in Juvenile Myositis.Seminars in arthritis and rheumatism · 2025Article
- Comparison of Patient-Reported Outcomes Measurement Information System Computerized Adaptive Testing Versus Fixed Short Forms in Juvenile Myositis.Arthritis care & research · 2023Article
- Juvenile Dermatomyositis: what comes next? Long-term outcomes in childhood myositis from a patient perspective.Pediatric rheumatology online journal · 2022Article
- Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases: Considerations and Future Directions.Rheumatic diseases clinics of North America · 2022Review
- Updates on Juvenile Dermatomyositis from the Last Decade: Classification to Outcomes.Rheumatic diseases clinics of North America · 2021Review
- Patient and physician discordance of global disease assessment in juvenile dermatomyositis: findings from the Childhood Arthritis & Rheumatology Research Alliance Legacy Registry.Pediatric rheumatology online journal · 2020Article
- Research priorities in childhood-onset lupus: results of a multidisciplinary prioritization exercise.Pediatric rheumatology online journal · 2019Article
Corrections and comments
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Authors and funding
9 authors at 6 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundA standardized set of quality measures for juvenile idiopathic inflammatory myopathies (JIIM) is not in use. Discordance has been shown between the importance ascribed to quality measures between patients and families and physicians. The objective of this study was to assess and compare the importance of various aspects of high quality care to patients with JIIM and their families with healthcare providers, to aid in future development of comprehensive quality measures.
methodsSurveys were developed by members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Juvenile Dermatomyositis Workgroup through a consensus process and administered to patients and families through the CureJM Foundation and to healthcare professionals through CARRA. The survey asked respondents to rate the importance of 19 items related to aspects of high quality care, using a Likert scale.
resultsPatients and families gave generally higher scores for importance to most of the quality measurement themes compared with healthcare professionals, with ratings of 13 of the 19 measures reaching statistical significance (p < 0.05). Of particular importance, however, was consensus between the groups on the top five most important items: quality of life, timely diagnosis, access to rheumatology, normalization of functioning/strength, and ability for self care.
conclusionsDespite overall differences in the rating of importance of quality indicators between patients and families and healthcare professionals, the groups agreed on the most important aspects of care. Recognizing areas of particular importance to patients and families, and overlapping in importance with providers, will promote the development of standardized quality measures with the greatest potential for improving care and outcomes for children with JIIM.
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