{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,9]],"date-time":"2026-05-09T03:05:49Z","timestamp":1778295949245,"version":"3.51.4"},"reference-count":50,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,2,25]],"date-time":"2021-02-25T00:00:00Z","timestamp":1614211200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2021,3]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Improved 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We performed a mixed\u2010methods 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\u2010making through recorded telephone interviews. Of 44 interviewees, 20 were patients (50% ages &lt;18 years), and 24 were caregivers (50% caring for children ages \u226410 years). We evaluated characteristics associated with high levels of reported concerns about JIA or medicines using Fisher\u2019s exact testing.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Decisions 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\u2010related complications (<jats:italic>P<\/jats:italic> = 0.002) and more motivated to continue treatment. However, participants expressing more concern about medicines were more likely to report treatment\u2010related complications (<jats:italic>P<\/jats:italic> = 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\u2010making was also informed by trust in rheumatologists and other information sources (e.g., family and online support groups).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>When 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\u2010making regarding stopping medicines for JIA.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.24129","type":"journal-article","created":{"date-parts":[[2019,12,27]],"date-time":"2019-12-27T09:37:55Z","timestamp":1577439475000},"page":"374-385","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Making Decisions About Stopping Medicines for Well\u2010Controlled Juvenile Idiopathic Arthritis: A Mixed\u2010Methods Study of Patients and Caregivers"],"prefix":"10.1002","volume":"73","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1831-1339","authenticated-orcid":false,"given":"Daniel B.","family":"Horton","sequence":"first","affiliation":[{"name":"Rutgers Robert Wood Johnson Medical School and Rutgers Center for Pharmacoepidemiology and Treatment Science Institute for Health Health Care Policy and Aging Research, New Brunswick, New Jersey, and Rutgers School of Public Health  Piscataway New Jersey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jomaira","family":"Salas","sequence":"additional","affiliation":[{"name":"Rutgers University  New Brunswick New Jersey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6382-3678","authenticated-orcid":false,"given":"Aleksandra","family":"Wec","sequence":"additional","affiliation":[{"name":"Mathematica Policy Research  Princeton New Jersey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Melanie","family":"Kohlheim","sequence":"additional","affiliation":[{"name":"Pediatric Rheumatology Care and Outcomes Improvement Network  Cincinnati Ohio"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pooja","family":"Kapadia","sequence":"additional","affiliation":[{"name":"Rutgers Robert Wood Johnson Medical School  Piscataway New Jersey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Timothy","family":"Beukelman","sequence":"additional","affiliation":[{"name":"University of Alabama at Birmingham"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexis","family":"Boneparth","sequence":"additional","affiliation":[{"name":"Columbia University Medical Center  New York New York"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ky","family":"Haverkamp","sequence":"additional","affiliation":[{"name":"University of Washington School of Medicine  Seattle"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2216-970X","authenticated-orcid":false,"given":"Melissa L.","family":"Mannion","sequence":"additional","affiliation":[{"name":"University of Alabama at Birmingham"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9410-2099","authenticated-orcid":false,"given":"L. 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