Work productivity and activity impairment in patients under 18 with juvenile idiopathic arthritis (JIA): the international UCAN CAN-DU prospective study

Abstract

Background To measure the impact, over time, of juvenile idiopathic arthritis (JIA) on the work and daily activities of patients under age 18. Methods Data were collected in a prospective international cohort—the Canada-Netherlands Personalized Medicine Network in Childhood Arthritis and Rheumatic Diseases which included patient- and parent-reported data collection. We used the standardized Work Productivity and Activity Impairment questionnaire (WPAI-SHP), and generalized estimating equations to model productivity loss and activity impairment over time for patients, adjusting for JIA disease activity (from cJADAS10). In addition, parents were asked about concerns of future employment for their children. Results We analyzed data collected up to 12 months from enrollment. The analytic sample included 154 patients who provided at least one response to WPAI-SHP over the study period (Median age = 17 years, 66% female). Patients missed on average 7% of work time due to their JIA (absenteeism). While at work, 27% of their work was impaired (presenteeism) due to their JIA. Accounting for both absenteeism and presenteeism, there was a 23% overall work impairment. In addition, patients had 29% impairment in activities. These impacts varied by disease activity, with patients with more severe JIA experiencing greater absenteeism, and work and activity impairment. Both work impairment and activity impairment were persistnent over time. Conclusion This study of JIA patients of all sub-types at different points in disease history is the first to capture work productivity impairment considering both absenteeism and presenteeism, and activity impairment on JIA patients under 18. There are substantial impacts on the ability of youth to be fully productive at work, affecting overall work impairment. In addition, there was substantial impairment in usual activities. Additional research should investigate which youth are at risk of productivity loss and activity impairment to better understand how to support young people with JIA as they enter their first jobs including how to ease their transition into employment, and provide supports such as navigating available accommodations.