Session Type: Abstract Submissions (ACR)
JIA is not a childhood disease, but a chronic disease that begins in childhood. Long term outcomes that physicians and patients care most about may not be reflected by short term surrogate outcomes. The aim of this study was to identify and characterize the factors that pediatric rheumatologists use to define a successful disease outcome for JIA patients in young adulthood, with the ultimate goal of creating an outcome assessment tool to provide a gold standard for comparing different treatment approaches for JIA.
In depth interviews were conducted with pediatric rheumatologists 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 coded via in vivo coding based on grounded theory resulting in mutually exclusive categories. Initial coding was for outcome themes and recoding for outcome descriptions to maintain the depth and meaning of the qualitative data.
13 pediatric rheumatologists from the US were interviewed; 8 were female, there was representation of all census regions and 54% had been practicing for more than 10 years. Coding for outcome theme identified 507 descriptive codes in 65 categories. These codes were regrouped into 14 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, and mental health. The themes with the most codes were chronic arthritis/joint damage, physical/functional, and medication. The median number of outcome theme codes per physician was 28 with a range of 14 to 55. The outcome theme categories were quantized based on the number of participants who mentioned the category; the categories mentioned by all 13 practitioners were chronic arthritis/joint damage, physical/functional, and expectations followed by medication and pain/fatigue mentioned by 12 practitioners. Recoding for outcome description resulted in 157 codes in 9 mutually exclusive description categories; ability, active disease/remission, feel normal, everything that they want to do, understanding, satisfaction, indistinguishable from peers, and acceptance. The description categories with the most codes were ability and burden/interference. The median number of outcome description codes per physician was 12 with a range of 7 to 18. Ability and burden/interference were mentioned by all 13 physicians.
This study begins to characterize the factors that pediatric rheumatologists use to define a successful disease outcome for JIA in young adulthood. Physicians prioritized physical outcomes, function and medication adverse effects in the definition of successful JIA management. Further studies are needed to characterize the factors that the patients prioritize. 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.
M. L. Mannion,
G. McGwin Jr.,
K. G. Saag,
Novartis Pharmaceutical Corporation,
Genentech and Biogen IDEC Inc.,
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/qualitative-assessment-of-important-long-term-outcomes-in-juvenile-idiopathic-arthritis/