Validation of the parent global assessment as a health-related quality of life measure in juvenile idiopathic arthritis: results from ReACCh-Out
Author:
Oen Kiem1, Toupin-April Karine2, Feldman Brian M3ORCID, Berard Roberta A4ORCID, Duffy Ciẚran M5, Tucker Lori B6, Tian Jiahao7, Rumsey Dax G8, Guzman Jaime6ORCID, Bolaria Roxana, Cabral David, Gross Katherine, Houghton Kristin, Morishita Kimberly, Petty Ross, Turvey Stuart E, Ellsworth Janet, Benseler Susanne, Johnson Nicole, Miettunen Paivi, Schmeling Heinrike, Larche Maggie, Cameron Bonnie, Laxer Ronald M, Spiegel Lynn, Schneider Rayfel, Silverman Earl, Yeung Rae S M, Levy Deborah M, Tse Shirley, Gibbon Michele, Roth Johannes, Duffy Karen Watanabe, Chetaille Anne-Laure, Dorval Jean, Boire Gilles, Bruns Alessandra, Campillo Sarah, Chedeville Gaelle, LeBlanc Claire, Scuccimarri Rosie, Haddad Elie, Cyr Claire St, Feldman Debbie, Lang Bianca, Ramsey Suzanne E, Stringer Elizabeth, Huber Adam M, Dancey Paul,
Affiliation:
1. Department of Pediatrics and Child Health, University of Manitoba , Winnipeg 2. School of Rehabilitation Sciences and Department of Pediatrics, University of Ottawa, Children's Hospital of Eastern Ontario Research Institute and Institut du Savoir Montfort , Ottawa 3. Division of Rheumatology, The Hospital for Sick Children, and Departments of Pediatrics and Medicine, and Institute of Health Policy, Management, and Evaluation, University of Toronto , Toronto 4. Pediatric Rheumatology, Children’s Hospital, London Health Sciences Centre , London 5. Children’s Hospital of Eastern Ontario and Department of Pediatrics, University of Ottawa , Ottawa 6. Division of Pediatric Rheumatology, British Columbia Children’s Hospital, and Department of Pediatrics, University of British Columbia , Vancouver 7. Department of Statistics and Actuarial Science, Simon Fraser University , Burnaby 8. Paediatric Rheumatology, Stollery Children’s Hospital and Department of Pediatrics, University of Alberta , Edmonton, Canada
Abstract
Abstract
Objectives
To (i) validate the JIA parent global assessment (parent global) as a health-related quality of life (HRQoL) instrument; (ii) evaluate measurement properties of accepted HRQoL measures relative to those of the parent global; and (iii) assess causal pathways determining parent global scores.
Methods
Data from the Research in Arthritis in Canadian Children emphasizing outcomes (ReACCh-Out) cohort were used. Measurement properties were assessed in 344 patients at enrolment and 6 months later. Causal pathways were tested by structural equation modelling to understand root causes and mediators leading to parent global scores.
Results
Construct validity was supported by Spearman correlations of 0.53–0.70 for the parent global with the Juvenile Arthritis Quality of Life Questionnaire, Quality of My Life health scale (HRQoML), Pediatric Quality of Life Inventory (PedsQL)-Parent, and Child Health Questionnaire (CHQ)-Physical. Exceptions were PedsQL-Child (0.44) and CHQ-Psychosocial (0.31). Correlations were lower (0.14–0.49) with disease activity measures (physician global assessment of disease activity, active joint count, ESR). Responsiveness of the parent global to improvement according to parent ratings (0.51) was acceptable and within the range (0.32–0.71) of that of other measures. Reliability estimates and measurement errors for all measures were unsatisfactory, likely due to the prolonged time between assessments. Causal pathways for the parent global matched those previously reported for HRQoML.
Conclusions
Our results offer support for the parent global as a valid measure of HRQoL for JIA. If confirmed, existing studies using the parent global may be re-interpreted, enhancing our knowledge of HRQoL in children with JIA.
Funder
New Emerging Team Canadian Institutes of Health Research Children’s Hospital Research Institute
Publisher
Oxford University Press (OUP)
Subject
Pharmacology (medical),Rheumatology
Reference49 articles.
1. Measurement of health status in children with juvenile rheumatoid arthritis;Singh;Arthritis Rheum,1994 2. Patient-reported wellbeing and clinical disease measures over time captured by multivariate trajectories of disease activity in individuals with juvenile idiopathic arthritis in the UK: a multicentre prospective longitudinal study;Shoop-Worrall;Lancet Rheumatol,2021 3. Long-term follow-up on effectiveness and safety of etanercept in juvenile idiopathic arthritis: the Dutch national register;Prince;Ann Rheum Dis,2009 4. Time of disease-modifying antirheumatic drug start in juvenile idiopathic arthritis and the likelihood of a drug-free remission in young adulthood;Minden;Arthritis Care Res,2019 5. Ongoing disease activity and changing categories in a long-term Nordic cohort study of juvenile idiopathic arthritis;Nordal;Arthritis Rheum,2011
Cited by
3 articles.
订阅此论文施引文献
订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献
|
|