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. 2019 Jul 30;75(1):1335.
doi: 10.4102/sajp.v75i1.1335. eCollection 2019.

Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa

Desiree Scott  1 , Christiaan Scott  2 , Jennifer Jelsma  1 , Deepthi Abraham  3 , Janine Verstraete  1
Affiliations

Validity and feasibility of the self-report EQ-5D-Y as a generic Health-Related Quality of Life outcome measure in children and adolescents with Juvenile Idiopathic Arthritis in Western Cape, South Africa

Desiree Scott et al. S Afr J Physiother. .

Abstract

Background: Health-Related Quality of Life (HRQoL) data together with clinical findings allow for monitoring of intervention efficacy and the effect on HRQoL. Children with Juvenile Idiopathic Arthritis (JIA) experience symptoms often persisting into adulthood, emphasising the need to track HRQoL.

Objectives: The aim of this study was to investigate psychometric properties of the EuroQol five-dimensional youth questionnaire (EQ-5D-Y) in children with JIA.

Methods: A cross-sectional, analytical study design was used. Children 8 to 15 years were recruited, completing the self-report EQ-5D-Y and two other HRQoL questionnaires. Known group validity was established by comparing the effect size between children with different disease severities. Concurrent validity was tested using Kruskal-Wallis to compare the ranking of scores on different questionnaires. Feasibility was assessed by number of missing responses and time to complete each questionnaire.

Results: All questionnaires were able to distinguish between children with different JIA severity. There was a significant difference in ranking of most Juvenile Arthritis Multidimensional Assessment Report dimension scores across EQ-5D-Y levels, (p < 0.05), indicating concurrent validity. There was poor concurrent validity with the PedsQL dimensions tested with EQ-5D-Y, except for 'pain' (p = 0.001). The EQ-5D-Y was the quickest to complete with no missing values.

Conclusion: This study showed that the EQ-5D-Y is valid and feasible in measuring HRQoL in JIA children and adequately responsive to detect change over time.

Clinical implications: It is quick and easy to use in a busy clinical setting, allowing for effective JIA management monitoring.

Keywords: EQ-5D-Y; Health-Related Quality of Life; JAMAR; Juvenile Idiopathic Arthritis; PedsQL; disease severity.

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Conflict of interest statement

None of the authors has competing interests in the article. D.S., J.V. and J.J. are all members of the EuroQoL Group. The main outcome measure, the EQ-5D-Y, was developed by the EuroQoL Group. This did not influence any reporting in the study.

Figures

FIGURE 1
FIGURE 1
Number of problems reported in each level of EuroQol five-dimensional youth (EQ-5D-Y) questionnaire. N = 64.
FIGURE 2
FIGURE 2
Number of responses in each level of Juvenile Arthritis Multidimensional Assessment Report Health-Related Quality of Life. N = 64.
FIGURE 3
FIGURE 3
Number of responses in each level of Paediatric Quality of Life Inventory Rheumatology Module. N = 64.
See this image and copyright information in PMC

References

    1. Adunuri N.R. & Feldman B.M., 2015, ‘Critical appraisal of studies measuring quality of life in juvenile idiopathic arthritis’, Arthritis Care and Research 67(6), 880–884. 10.1002/arc.22514 - DOI - PubMed
    1. Angeles-Han S. & Prahalad S., 2010, ‘The genetics of juvenile idiopathic arthritis: What is new in 2010?’ Current Rheumatology Reports 12(2), 87–93. 10.1007/s11926-010-0087-0 - DOI - PubMed
    1. April K.T., Cavallo S., Feldman D.E. & Ni A., 2012, ‘The associations among economic hardship, caregiver psychological distress, disease activity, and health-related quality of life in children with juvenile idiopathic arthritis’, Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 21(7), 1185–1191, viewed 27 July 2013, from http://www.ncbi.nlm.nih.gov/pubmed/21987031. - PubMed
    1. Burström K., Bartonek A., Broström E.W., Sun S. & Egmar A.C., 2014, ‘EQ-5D-Y as a health-related quality of life measure in children and adolescents with functional disability in Sweden: Testing feasibility and validity’, Acta Paediatrica, International Journal of Paediatrics 103(4), 426–435. 10.1111/apa.12557 - DOI - PubMed
    1. Carle A.C., Dewitt E.M. & Seid M., 2011, ‘Measuring health related quality of life in juvenile rheumatoid arthritis’, Arthritis Care & Research 63(11), 438–445. https://doi-org/10.1002/acr.20560 - DOI - PMC - PubMed

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