Health-related quality of life in childhood arthritis: the impact of generic versus disease-specific instruments

Abstract Background Health-related quality of life (HRQoL) data provided by children with arthritis and their parents is critically important to enable co-design of care and shared decision making. However, there is significant heterogeneity in how HRQoL is captured, as both generic (EQ-5D-Y-5L) and disease-specific instruments (JAMAR) are available. This study aimed to examine the concordance of the JAMAR and EQ-5D-Y-5L questionnaires in childhood arthritis. Methods The international UCAN CAN-DU study prospectively enrolled consecutive children with arthritis across Canada and the Netherlands. This study included patients in whom corresponding JAMAR and EQ-5D-Y-5L questionnaires were completed on the same date by either the patients or their parents. The concordance of the questionnaire responses was measured by comparing the answers given to five specific JAMAR domains corresponding to the EQ-5D-Y-5L dimensions (anxiety/depression; mobility; pain/discomfort; self-care; usual activities). The impact of disease activity was assessed. Spearman’s correlation explored the association between global scales from the JAMAR and the EQ-5D-Y-5L. Results The study included 678 children with JIA; 63% were female; the median age at first questionnaire was 11.9 years (interquartile range: 6.2–15.1). Concordances between JAMAR and EQ-5D-Y-5L responses were found in 84% of the questions across all domains (84%, 82%, 85%, 87%, and 82% for anxiety/depression, mobility, pain/discomfort, self-care, and usual activities, respectively). In a state of inactive disease, generic and disease-specific instruments converged across all domains except for pain/discomfort. Comparison of global assessment scales revealed a high correlation between the EQ-5D-Y-5L and the JAMAR (Spearman’s correlation: R = -0.72, p < 0.001). Conclusions Patients and parents provided different responses to generic and disease-specific HRQoL instruments. The concordance was reduced in all domains except for pain/discomfort when children were experiencing high disease activity, highlighting the perceived conceptual differences and limitations of HRQoL instruments.

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Publication Details

Journal
Pediatric Rheumatology
Published
2026-09-12
DOI
https://doi.org/10.1186/s12969-026-01274-9
Primary Topic
Autoimmune and Inflammatory Disorders Research
Type
article
Field-Weighted Citation Impact
0.00

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article

Health-related quality of life in childhood arthritis: the impact of generic versus disease-specific instruments

Erkan Demirkaya, Lillian Lim, Jennifer J. Lee, Rayfel Schneider et al.
Pediatric Rheumatology
Autoimmune and Inflammatory Disorders Research
article

Health-related quality of life in childhood arthritis: the impact of generic versus disease-specific instruments

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

Abstract

Abstract Background Health-related quality of life (HRQoL) data provided by children with arthritis and their parents is critically important to enable co-design of care and shared decision making. However, there is significant heterogeneity in how HRQoL is captured, as both generic (EQ-5D-Y-5L) and disease-specific instruments (JAMAR) are available. This study aimed to examine the concordance of the JAMAR and EQ-5D-Y-5L questionnaires in childhood arthritis. Methods The international UCAN CAN-DU study prospectively enrolled consecutive children with arthritis across Canada and the Netherlands. This study included patients in whom corresponding JAMAR and EQ-5D-Y-5L questionnaires were completed on the same date by either the patients or their parents. The concordance of the questionnaire responses was measured by comparing the answers given to five specific JAMAR domains corresponding to the EQ-5D-Y-5L dimensions (anxiety/depression; mobility; pain/discomfort; self-care; usual activities). The impact of disease activity was assessed. Spearman’s correlation explored the association between global scales from the JAMAR and the EQ-5D-Y-5L. Results The study included 678 children with JIA; 63% were female; the median age at first questionnaire was 11.9 years (interquartile range: 6.2–15.1). Concordances between JAMAR and EQ-5D-Y-5L responses were found in 84% of the questions across all domains (84%, 82%, 85%, 87%, and 82% for anxiety/depression, mobility, pain/discomfort, self-care, and usual activities, respectively). In a state of inactive disease, generic and disease-specific instruments converged across all domains except for pain/discomfort. Comparison of global assessment scales revealed a high correlation between the EQ-5D-Y-5L and the JAMAR (Spearman’s correlation: R = -0.72, p < 0.001). Conclusions Patients and parents provided different responses to generic and disease-specific HRQoL instruments. The concordance was reduced in all domains except for pain/discomfort when children were experiencing high disease activity, highlighting the perceived conceptual differences and limitations of HRQoL instruments.

Pediatric Rheumatology
University of Toronto (CA), Utrecht University (NL), Trinity College Dublin (IE), Hospital for Sick Children (CA), Alberta Children's Hospital (CA), Children's Health Ireland at Crumlin (IE), University Medical Center Utrecht (NL), Alberta Bone and Joint Health Institute (CA), Wilhelmina Children's Hospital (NL)
Genome Canada, Ontario Genomics, ZonMw, Genome Alberta, Canadian Institutes of Health Research
Peace, Justice and strong institutions
Openalex Percentile: Top 10%
Autoimmune and Inflammatory Disorders Research
DOIOpen Access PDFOpenAlex
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