PROVIDER PERSPECTIVES ON DECISION-MAKING IN JUVENILE IDIOPATHIC ARTHRITIS

Purpose: To understand the process of treatment decision-making in juvenile idiopathic arthritis (JIA) and assess opportunities for a shared decision-making (SDM) intervention.

Method: Pediatric rheumatology providers were recruited from 4 academic 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 family education or decision-making. Semi-structured interviews elicited how the participating providers (n=16) interact with families to make treatment decisions.  Interviews were audio-recorded and transcribed verbatim.    Multiple choice questions, constructed based on initial interviews, were presented at a conference of pediatric rheumatology providers as a member-check and 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 participants (n=24 from 12 children’s hospitals). Data was retained for analysis and detailed notes were taken.    Content analysis was used by a multi-disciplinary research team to determine major and minor themes.

Result: Across provider types and institutions, treatment decisions were consistently initiated by the physician with other providers focused on educating families and assessing barriers to treatment adherence.  Between and within institutions, physicians differed in their preferred treatment algorithm which then drove the options initially presented to families.  Physicians’ decisions focused primarily 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, but typically after limiting the options to fit the clinical situation and the physician’s own 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 physician preferences and treatment guidelines.  However, due to the absence of guidelines on treatment discontinuation, family preferences are more likely to be considered. This suggests that the decision to discontinue treatment may be ideal for a SDM intervention.