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

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).

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.

Higher caregiver perceived economic hardship [(β = 0.03, 95% CI = 0.005, 0.06), P = 0.02], psychological distress [(β = 0.02, 95% CI = 0.006, 0.03), P = 0.004], and higher children’s disease activity [(β = 0.11, 95% CI = 0.07, 0.15), P < 0.0001] were associated with worse children’s HRQOL.

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.