ArticleArthritis care & research2021
Making Decisions About Stopping Medicines for Well-Controlled Juvenile Idiopathic Arthritis: A Mixed-Methods Study of Patients and Caregivers.
Article in Arthritis care & research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 4 of them syntheses that pooled it.
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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.
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Who cites it
15 citing papers in PubMed, 4 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- A systematic review of the social functioning of youth with JIA: Barriers, stigma, and resources.Journal of pediatric psychology · 2026Pooled it
- Approaches and outcomes of adalimumab discontinuation in patients with well-controlled inflammatory arthritis: a systematic search and review.Pediatric rheumatology online journal · 2024Pooled it
- Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.BMJ supportive & palliative care · 2023Pooled it
- Treatment Withdrawal Following Remission in Juvenile Idiopathic Arthritis: A Systematic Review of the Literature.Paediatric drugs · 2019Pooled it
- Clinical and cost-effectiveness of eculizumab withdrawal in atypical haemolytic uraemic syndrome: the SETS aHUS multi-centre, open-label, prospective and single-arm study.Health technology assessment (Winchester, England) · 2026Article
- Which Factors Influence Decisions to Withdraw from Eculizumab: A Qualitative Study of Patients Diagnosed with aHUS.The patient · 2026Article
- Development and Delivery of an Integrated Digital Health Care Approach for Children With Juvenile Idiopathic Arthritis: Usability Study.JMIR pediatrics and parenting · 2024Article
- Methotrexate Intolerance in Juvenile Idiopathic Arthritis: Definition, Risks, and Management.Paediatric drugs · 2024Review
- Prescriber Uncertainty as Opportunity to Improve Care of Type 2 Diabetes with Chronic Kidney Disease: Mixed Methods Study.Journal of general internal medicine · 2023Article
- Researchers in rheumatology should avoid categorization of continuous predictor variables.BMC medical research methodology · 2023Article
- 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
- Biomarkers in Systemic Juvenile Idiopathic Arthritis, Macrophage Activation Syndrome and Their Importance in COVID Era.International journal of molecular sciences · 2022Review
- Prevention of disease flares by risk-adapted stratification of therapy withdrawal in juvenile idiopathic arthritis: results from the PREVENT-JIA trial.Annals of the rheumatic diseases · 2022Article
- Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children.Pediatric rheumatology online journal · 2021Article
- Recent progress in the treatment of non-systemic juvenile idiopathic arthritis.Faculty reviews · 2021Review
Corrections and comments
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Authors and funding
12 authors at 8 institutions in 3 countries.
Funding
Abstract
objectiveImproved treatments for juvenile idiopathic arthritis (JIA) have increased remission rates. We conducted this study to investigate how patients and caregivers make decisions about stopping medications when JIA is inactive.
methodsWe performed a mixed-methods study of caregivers and patients affected by JIA, recruited through social media and flyers, and selected by purposive sampling. Participants discussed their experiences with JIA, medications, and decision-making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages <18 years), and 24 were caregivers (50% caring for children ages ≤10 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher's exact testing.
resultsDecisions about stopping medicines were informed by competing risks between disease activity and treatment. Participants who expressed more concerns about JIA were more likely to report disease-related complications (P = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment-related complications (P = 0.04) and felt more compelled to stop treatment. Additionally, participants considered how JIA or treatments facilitated or interfered with their sense of normalcy and safety, expressed feelings of guilt and regret about previous or potential adverse events, and reflected on uncertainty and unpredictability of future harms. Decision-making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups).
conclusionWhen deciding whether to stop medicines whenever JIA is inactive, patients and caregivers weigh competing risks between disease activity and treatment. Based on our results, we suggest specific approaches for clinicians to perform shared decision-making regarding stopping medicines for JIA.
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Registered trials
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