Burden of Childhood Arthritis: Work Productivity Loss and Activity Impairment of Parents and Caregivers

OBJECTIVES: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease for children and is associated with lifelong joint pain and disability risks. Beyond the child’s suffering, there is a substantial impact on parent’s quality of life, employment and daily activities. This study aimed to measure changes to work commitment, absenteeism, presenteeism, and daily activities of parents of children with JIA.

METHODS: The prospective international Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases (UCAN CAN-DU) study captures consecutive parent reported data including the standardized validated instrument Work Productivity and Activity Impairment questionnaire (WPAI). Generalized estimating equations were used to model productivity loss, activity impairment, and wages lost.

RESULTS: Data collected up to 12 months from enrollment were analyzed. Overall, 703 parents participated; Canadian, n=293, Dutch, n=410. Most respondents were mothers (84%), median age was 42 years (IQR = 9). A change in work commitment in the last year was reported by 10%, mostly reducing working hours (8%). Over a one-year period, we estimate 6% of missed work time due to their child’s JIA (absenteeism). While at work, parents reported that 12% of their work was impaired (presenteeism). Accounting for both, caregivers experienced 17% and 12% of work and activity impairment, respectively, due to their child’s JIA. Parents of children with higher JIA activity experienced higher work impacts and wage loss. The absenteeism resulted in an estimated average annual wage loss of €3,759 per family.

CONCLUSIONS: This is the first study to capture work productivity loss and activity impairment of childhood arthritis parents in a large multi-national cohort. Parents reported work productivity loss, activity impairment, and wage loss which varied across JIA activity levels. The key determinants of productivity loss, such as clinical features, need to be explored to better understand the impact on families and where extra supports could ease family burden.