Abstract
Objective
To determine the impact of juvenile idiopathic arthritis (JIA) on work productivity loss and daily activities of parents.
Methods
The multicenter Canada‐Netherlands Understanding Childhood Arthritis Network (UCAN) CAN‐DU and CURE study captures consecutive clinical and patient‐reported data for patients and parents since 2019. Parents’ responses to the Work Productivity and Activity Impairment, Specific Health Problem related to their child's JIA were combined with demographic information and clinical reports from enrollment to 12 months. Demographic and clinical data were summarized, and generalized estimating equations (GEEs) were used to estimate absenteeism, presenteeism, work impairment, daily activities impairment, and wage loss. GEE covariates included JIA activity state, time from study enrollment, patient age group, and patient age at diagnosis.
Results
Of the 754 parents, 635 were mothers with median age of 42 years (interquartile range = 10 years). Changes in work commitment were reported by 79 parents, primarily reducing working hours (n = 55). Over 12 months, because of their child's JIA, there was an estimated 6% of missed work time (absenteeism), 14% of working time impairment (presenteeism), 12% of combined work impairment, and 16% of daily activities impairment. Absenteeism resulted in an estimated average annual wage loss of €3,510 per family. Work impairment and activity impairment estimates were higher for parents of children with more severe disease activity.
Conclusion
This study is the first to capture the adjusted work impairment and activity impairment for a large international cohort of parents of children across all JIA subtypes and at different stages of treatment.