Background/Purpose: Juvenile idiopathic arthritis (JIA) is a chronic disease that requires long-term treatment. Patients and families face multiple treatment decisions over the course of illness that can often be complex. This project aims to improve the engagement of patients and families facing JIA treatment decisions, improve information exchange with care providers, and identify opportunities for a shared decision-making (SDM) intervention.

Methods: Sixteen pediatric rheumatology providers were recruited from four children’s hospitals using purposive and snowball sampling to include a range of provider types (eg, nurse, physician, trainee) with unique approaches to working with families or a particular interest in education or decision-making. The providers participated in semi-structured interviews eliciting how they interact with patients and families in developing and adapting treatment plans.  Interviews were audio-recorded and transcribed verbatim. The transcripts were coded by a multi-disciplinary team to determine major and minor themes. Based on the themes identified in the semi-structured interviews, multiple choice questions were presented at a conference of pediatric rheumatology providers to enrich understanding of data from individual interviews.  An audience response system captured the pattern of responses and helped the research team facilitate conversation about the reasons for variation among multi-site participants (n=24). Data was retained for analysis and detailed notes were taken.

Results: Treatment decisions were consistently initiated by the physician, with other providers focused on educating families and assessing barriers to treatment adherence. Physicians differed in their preferred treatment algorithm and options initially presented to families. Physicians’ decisions focused on expected improvement with treatment, rather than treatment risks or family preferences.  Providers described a range of approaches to inform families about treatment options and to tailor information according to providers’ perceptions of a family’s information needs, level of comprehension or mood (eg, anxiety). Participants described including families in the decision to initiate JIA treatment after limiting the options to fit the clinical situation and the physician’s preferences.  In contrast, providers described multiple methods for involving families in decisions related to the implementation of chosen treatments. Family preferences were also seen as particularly integral in the decision to stop treatment after symptom remission.

Conclusion: Decision-making on initial JIA treatment is largely driven by treatment guidelines and physician preferences. Such guidelines do not exist around treatment discontinuation and in that scenario family preferences are more likely to be considered. The uncertainty around standardized procedures for treatment discontinuation may make it the ideal time for a shared decision-making intervention (SDM) between the patient, family and provider. Next steps include engaging a stakeholder panel consisting of providers, educators and parents to discuss and evaluate possible interventions.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/enhancing-shared-decision-making-in-juvenile-idiopathic-arthritis/