Child and Caregiver Beliefs of Importance of Physical Function and Quality of Life in Juvenile Idiopathic Arthritis: A Survey Study

Abstract

Purpose: To evaluate patient-caregiver beliefs of relative importance across 4 domains while living with juvenile idiopathic arthritis (JIA). Methods: This was a cross-sectional, anonymous survey study conducted in an academic medical center. Participants with JIA and caregivers (N = 151) completed a Likert-style survey to rate items by importance of knowledge about 4 domains: medications, physical activity, routine measures, and quality of life. Results: Knowledge of medication issues ranked higher than the remaining 3 domains (4.2 ± 0.7 points vs 4.0 ± 0.7, 4.1 ± 0.8, and 4.0 ± 0.9 points, respectively; P = .026; P = .026). Compared with caregivers, participants rated importance lower for all 4 domains. Conclusions: Gait and physical activity and well-being are not uniformly measured as part of routine clinical care and disease tracking in JIA. Both participants and caregivers ranked knowledge of physical activity similarly to routine office measures and quality of life. Inclusion of these measures in routine care could improve people centeredness and inform treatment plans.