Background/Purpose: The aim of this study was to identify and characterize the factors that JIA patients in young adulthood use to define a successful disease outcome, with the ultimate goal of creating an outcome assessment tool to provide a gold-standard for comparing different treatment approaches for JIA.

Methods: In depth personal interviews were conducted with adolescents (ages 14-18) and young adults (ages 19-40) with JIA and parents of children with JIA to generate themes regarding successful treatment, acceptable disease states, and optimal disease management outcomes for young adults with JIA.  Interviews were recorded and transcribed; then they were coded using in vivo coding to generate mutually exclusive categories that were further combined into themes and quantized.  The outcome topic categories were also quantized based on the number of participants who mentioned the category. Outcome themes were compared to themes generated from interviews with pediatric rheumatologists. 4 adolescents with JIA, 6 young adults with JIA, and 10 parents of children with JIA were interviewed with representation of all US census regions. 13 pediatric rheumatologists from the US were interviewed. 

Results:  The initial in vivo codes were regrouped into 15 outcome topics and quantized; chronic arthritis/joint damage, physical/functional, medication, pain/fatigue, expectations, vocation/profession, social/participation, daily life/activities of daily living, health, vision, family, independence, appearance, mental health, and community.  The categories with the most patient/parent codes were medication, social/participation, and community while the categories with the most physician codes were chronic arthritis/joint damage, physical/functional, and medication. The categories mentioned by all patients and parents were physical/functional, medication, social/participation, and community. The transcripts were recoded for description of outcomes resulting in 9 mutually exclusive categories; ability, active disease/remission, interference/burden, feel normal, everything that they want to do, understanding, satisfaction, indistinguishable from peers, and acceptance.  The categories with the most patient/parent codes were interference/burden and indistinguishable from peers; the categories with the most physician codes were ability and interference/burden.  Interference/burden was mentioned in all interviews, indistinguishable from peers was mentioned by all patients and parents and ability was mentioned by all physicians.

Conclusion: This study begins to characterize the factors that adolescents with JIA, young adults with JIA, and parents of children with JIA use to define a successful disease outcome for JIA in young adulthood. Patients prioritize medication burden and effects, social and participation impacts, and the idea of a supportive community in the definition of successful JIA management. With additional studies, the definition of a gold standard based on physician and patient input will enable patients to be better informed about their treatment options and expected future outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/qualitative-assessment-of-patient-important-long-term-outcomes-in-juvenile-idiopathic-arthritis/