The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis

Purpose To examine the associations among caregiver perceived economic hardship, psychological distress, children's disease activity, and health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA). Methods Caregivers of 182 children with JIA (ages 2-18) attending the rheumatology clinics at the Montreal Children's Hospital and the British Columbia's Children Hospital completed a series of questionnaires on perceived financial hardship, caregiver psychological distress, and children's HRQOL at baseline, 6 and 12 months. Clinical information such as disease activity was obtained from medical charts. Statistical models were used to look at the significance of several factors of interest while controlling for possible confounders. Results Higher caregiver perceived economic hardship [(beta = 0.03, 95% CI = 0.005, 0.06), P = 0.02], psychological distress [(beta = 0.02, 95% CI = 0.006, 0.03), P = 0.004], and higher children's disease activity [(beta = 0.11, 95% CI = 0.07, 0.15), P < 0.0001] were associated with worse children's HRQOL. Conclusions Findings suggest that caregiver financial hardship and psychological distress as well as children's disease activity may impact children's HRQOL. By providing psychological help to parents, offering information regarding financial resources in the community and by ensuring disease control, especially when the disease is severe, health providers may improve children's health outcomes.