Background/Purpose: Prior research has examined factors important to clinicians in deciding whether to withdraw therapy for inactive JIA, but little is known about the perspectives of patients and families confronted with these decisions. We studied how patients with JIA and caregivers consider whether to continue or stop treatment for well-controlled JIA.

Methods: We conducted semi-structured telephone interviews of patients with JIA (age 13 years and older) and caregivers of children with JIA in the US. Participants were purposively chosen among those who completed a preliminary online survey about demographics and medical history. Interviews included questions about experiences with JIA, medicines for JIA, and factors that influenced decision-making around treatment for active and inactive disease. Interviews were transcribed and independently coded by two researchers; coding was reviewed for consistency and accuracy by two other investigators. Another investigator conducted data triangulation for corroboration. Thematic analysis drew upon the common-sense model of self-regulation to categorize and compare emergent themes.

Results: We interviewed a diverse group of 20 patients (10 age under 18) and 24 caregivers (11 parents of children age under 11) (Table). Key themes revolved around perceived risks, fears, and threats. These concerns applied both to having JIA on the one hand and to taking medicines on the other hand: symptoms versus side effects; long-term damage (existing or feared); interference in school, work, and activities by disease, infusions, or side effects; and emotional burdens and behavioral problems from having JIA versus taking medicines. How participants balanced these competing risks related to past and ongoing experiences as well as concerns about long-term effects, the latter mainly among parents and adults with JIA. Coping strategies, disease state and duration, uncertainty and unpredictability, and trust in the rheumatology team were key modifying factors.

Conclusion: For patients and parents, decisions around withdrawing JIA medicines revolve around a trade-off between risks and fears of medicines and risks and fears of the disease itself. Balancing these risks and fears is influenced strongly by negative prior experiences and complications of JIA or its treatment as well as perceived threats of long-term damage. Clinicians’ awareness of this trade-off may help improve shared decision-making around withdrawing treatment for inactive JIA.