Abstract
Objective
Juvenile idiopathic arthritis (JIA) impacts children and their families, often increasing caregiver burden and diminishing quality of life. This study assessed the care‐related quality of life of parent‐caregivers of children with JIA using the Care‐Related Quality of Life instrument (CarerQol), identified the most affected caregiving dimensions, and explored associations with sociodemographic and clinical factors.
Methods
We analyzed baseline data from the Canada‐Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN‐DU) study. Clinical data including symptoms, disease activity, and caregiver‐reported data were collected. Caregivers of children under 18 completed the CarerQol, a preference‐weighted caregiver quality‐of‐life instrument from which a utility score (0–100, worst to better caregiving situation) can be calculated, as well as a well‐being visual analog scale (VAS; 0–10, completely unhappy to happy). Stepwise linear regression examined associations between CarerQol utility and VAS; and sociodemographic and clinical variables, with model selection based on goodness of fit.
Results
Among 439 caregivers, 86% were mothers, the mean age was 41 years, and 44% of children had oligoarticular JIA. The mean CarerQol scores were utility of 81.5 (SD 10.8); VAS of 7.3 (SD 1.7). Most caregivers reported fulfillment and caregiving support. Over 40% reported problems in physical health, mental health, and combining caregiving with daily activities. Lower utilities were associated with receiving extra help, having physical health conditions, caring for children using injectable medication, and caring for male children. Higher utilities were associated with living with a partner, caring for children aged 10 to 15, and residing in the Netherlands (
P
Conclusion
Many caregivers experience substantial burden, particularly in physical and mental health, and managing caregiving alongside daily responsibilities. Child‐ and family‐related factors are key variables associated with caregiving quality of life. Results emphasize the need for tailored interventions and support systems to improve JIA caregivers’ well‐being.