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.
Rutgers University, New Brunswick, New Jersey.
Arthritis Care Res (Hoboken). 2021 Mar;73(3):374-385. doi: 10.1002/acr.24129.
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.
We 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.
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-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).
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-making regarding stopping medicines for JIA.
改善青少年特发性关节炎（JIA）的治疗方法提高了缓解率。我们进行这项研究是为了调查当 JIA 处于不活跃状态时，患者和照顾者如何决定停止药物治疗。
我们通过社交媒体和传单招募了受 JIA 影响的照顾者和患者，通过有目的的抽样进行了一项混合方法研究。参与者通过记录的电话访谈讨论了他们的 JIA、药物治疗和决策经验。在 44 名受访者中，有 20 名是患者（<18 岁的占 50%），24 名是照顾者（照顾 10 岁以下儿童的占 50%）。我们使用 Fisher 精确检验评估与报告对 JIA 或药物治疗的高度关注相关的特征。
停止药物治疗的决定受到疾病活动与治疗之间的竞争风险的影响。对 JIA 表示更多担忧的参与者更有可能报告与疾病相关的并发症（P=0.002），并且更有动力继续治疗。然而，对药物治疗表示更多担忧的参与者更有可能报告与治疗相关的并发症（P=0.04），并感到更有必要停止治疗。此外，参与者考虑了 JIA 或治疗如何促进或干扰他们的正常感和安全感，对以前或潜在的不良事件表示内疚和遗憾，并思考未来危害的不确定性和不可预测性。决策还受到对风湿病医生和其他信息来源（例如，家庭和在线支持团体）的信任的影响。
当 JIA 不活跃时决定是否停止药物治疗时，患者和照顾者权衡疾病活动与治疗之间的竞争风险。根据我们的结果，我们建议临床医生采用特定方法，共同决定是否停止 JIA 的药物治疗。
