How Does Juvenile Idiopathic Arthritis Affect the Work and Usual Activities of Parent Caregivers? The UCAN CAN-DU and CURE International Prospective Study

Objectives. To measure the impact of Juvenile idiopathic arthritis (JIA), on the work productivity and daily activities of caregivers over time, and investigate factors affecting these impacts.

Methods. The Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) and CURE study captures consecutive caregiver reported data including the standardized instrument Work Productivity and Activity Impairment (WPAI) questionnaire. The cohort includes all subtypes of JIA, and patients across the disease trajectory from new diagnosis to starting or stopping biologics. Generalized estimating equations (GEE) were used to model productivity loss, activity impairment, and wages lost due to the child’s JIA over a 1-year-period from study enrollment. Covariates included JIA disease activity state (eg, inactive, minimal, moderate/high), time from enrollment (ie, baseline, 3, 6, 9, 12 months), patient age group (ie, 0-4, 5-9, 10-15, 16+ years), JIA clinical diagnosis (yes or no), and patient age at diagnosis.

Results. Overall, 703 caregivers were included who had at least 1 WPAI entry during the 1-year period from enrollment in the study. Most caregivers were mothers (84%), median age of 42 years (IQR = 37-49). A change in work commitment in the last year was reported by 10 percent of caregivers, mostly reducing working hours (8%). The GEE estimates are as follows. Over a 1-year period, we estimate 6% of missed work time due to their child’s JIA (absenteeism). Parents reported that 12% of their time at work was impaired (presenteeism). Accounting for both, caregivers’ work productivity decreased 17% on average. They also experienced impairment in 12% of their usual activities. Absenteeism resulted in an estimated average annual wage loss of €3,759 per family. Work productivity loss, activity impairment, and wage loss varied by JIA activity levels, with caregivers of children with more severe JIA (higher disease activity) experiencing higher levels of burden.

Conclusion. Our study is the first to capture work productivity loss and activity impairment for caregivers of children with all subtypes of JIA and account for clinical features such as disease activity, and formal diagnosis. Future work should further investigate the determinants of productivity loss to better understand the impact on families and where extra support for working parents could ease family burden.