ArticleJournal of patient-reported outcomes2018
Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis.
Article in Journal of patient-reported outcomes, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Pooled it
- Multisite Randomized Clinical Trial Evaluating an Online Self-Management Program for Adolescents With Juvenile Idiopathic Arthritis.Journal of pediatric psychology · 2019Trial
- Congruence Between Child Self-Reported and Caregiver-Proxy-Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus.The Journal of rheumatology · 2026Observational
- CAR T cell therapy for children with rheumatic disease: the time is now.Nature reviews. Rheumatology · 2025Review
- Validation of the EQ-5D-Y-5L parent-proxy version among children with juvenile idiopathic arthritis.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Methotrexate Intolerance in Juvenile Idiopathic Arthritis: Definition, Risks, and Management.Paediatric drugs · 2024Review
- Health Equity Implications of Missing Data Among Youths With Childhood-Onset Systemic Lupus Erythematosus: A Proof-of-Concept Study in the Childhood Arthritis and Rheumatology Research Alliance Registry.Arthritis care & research · 2023Article
- Article
- Evaluation of the acceptability of patient-reported outcome measures in women following pelvic floor procedures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
- Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing.Journal of participatory medicine · 2022Article
- Cannabidiol (CBD) Use among children with juvenile idiopathic arthritis.Pediatric rheumatology online journal · 2021Article
- Stakeholder Development of an Online Program to Track Arthritis-Related Patient-Reported Outcomes Longitudinally: Live Yes! INSIGHTS.ACR open rheumatology · 2020Article
- Patient-Reported Outcome Measures in Cystic Fibrosis: Protocol for a Systematic Review.JMIR research protocols · 2020Article
- Pain, functional disability, and their Association in Juvenile Fibromyalgia Compared to other pediatric rheumatic diseases.Pediatric rheumatology online journal · 2019Observational
- The Psychological Impact of Dental Aesthetics in Patients with Juvenile Idiopathic Arthritis Compared with Healthy Peers: A Cross-Sectional Study.Dentistry journal · 2019Article
- How Returning Aggregate Research Results Impacts Interest in Research Engagement and Planned Actions Relevant to Health Care Decision Making: Cohort Study.Journal of medical Internet research · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundChildren with Juvenile Idiopathic Arthritis (JIA) often have poor health-related quality of life (HRQOL) despite advances in treatment. Patient-centered research may shed light on how patient experiences of treatment and disease contribute to HRQOL, pinpointing directions for improving care and enhancing outcomes.
methodsParent proxies of youth enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry shared patient-reported outcomes about their child's HRQOL and experiences of disease and treatment burden (pain interference, morning stiffness, history of medication side effects and methotrexate intolerance). Contributions of these measures to HRQOL were estimated using generalized estimating equations accounting for site and patient demographics.
resultsPatients (
conclusionsFor youth with JIA, HRQOL is multidimensional, reflecting disease as well as treatment factors. Adverse treatment experiences undermine HRQOL even after accounting for disease symptoms and disease activity and should be assessed routinely to improve wellbeing.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.