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

To measure the impact, over time, of juvenile idiopathic arthritis (JIA) on the work and daily activities of patients under age 18. 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. 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. 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.

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Journal
Arthritis Research & Therapy
Published
2026-03-27
DOI
https://doi.org/10.1186/s13075-026-03785-y
Primary Topic
Autoimmune and Inflammatory Disorders Research
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article
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article

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

Erkan Demirkaya, Bianca Lang, Lillian Lim, Maarten J. IJzerman et al.
Arthritis Research & Therapy
Autoimmune and Inflammatory Disorders Research
article

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

Erkan Demirkaya, Bianca Lang, Lillian Lim, Maarten J. IJzerman, Rayfel Schneider, Chelsea DeCoste, David A. Cabral, Marleen Verkaaik, Amy L. Xu, Sebastiaan J. Vastert, Evelyn Rozenblyum, Andrea Human, Rebeka Stevenson, Tania Cellucci, Liane Heale, Giske Biesbroek, Daniah Basodan, Tara McGrath, Gaëlle Chédeville, Suzanne Ramsey, Roman Juřenčák, Michelle Batthish, D. Schonenberg, Ruud H J Verstegen, Ravneet Kaur Sran, Michelle M. A. Kip, Heinrike Schmeling, Dilan Dissanayake, Gordon S. Soon, Rosie Scuccimarri, Joost Frans Swart, Gillian R. Currie, Mehul Jariwala, Piya Lahiry, S. Benseler, Elizaveta Limenis, Mercedes Chan, Arthur H. Cheng, Tommy Gerschman, David Marshall, Elodie Boudes, Jeanine McColl, Mariken Gruppen, Alisa Rachlis, Muhammed Dhalla, Kate M. Neufeld, Rodrigo Dal Ben, Hon Yan Ng, P Müller, Merlijn J van den Berg, Alexander Mosoiu, Annet van Royen-Kerkhof, Elizabeth Legger, Sylvia Kamphuis, Jaime Guzman, Tala El Tal, Alan Rosenberg, Nico Wulffraat, Shirley Tse, Herman Tam, Philomine van Pelt, Paivi Miettunen, Marinka Twilt, Dax G. Rumsey, Elizabeth Stringer, Lori Tucker, Paul Dancey, Lynn Spiegel, Erika Van Nieuwenhove, Jonathan Park, UCAN CURE Consortia the UCAN CAN-DU, Claire LeBlanc, Rae S. M. Yeung, Roberta Berard, Bruno Pereira, Nadia Luca, Adam Huber, Sarah Campillo, Ciarán Duffy, Tristan Kerr, Jennifer Ji Young Lee, Harper Cheng, Regina de Geus, Trang Duong, Deborah Levy, Joseph Cafazzo, Esther Hoppenreijs, Lily Lim, Nicole Johnson, Kim Morishita, BrenleighJebb Jebb, Sytze de Rook, Berent Prakken, Clare Hutchinson, Wineke Armbrust, Brian Feldman, Kristin Houghton, Marc Jansen, Danielle Brinkman, Ronald Laxer, Nickolas Blanchette, Ross Petty, Ellen Schatorje
article en

Abstract

To measure the impact, over time, of juvenile idiopathic arthritis (JIA) on the work and daily activities of patients under age 18. 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. 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. 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.

Arthritis Research & Therapy
University of Calgary (CA), University of Toronto (CA), Trinity College Dublin (IE), Hospital for Sick Children (CA), Alberta Children's Hospital (CA), Children's Health Ireland at Crumlin (IE), Wilhelmina Children's Hospital (NL)
Decent work and economic growth
Openalex Percentile: Top 5%
Autoimmune and Inflammatory Disorders Research
DOIOpen Access PDFOpenAlex
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