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Chulalongkorn Medical Journal

Abstract

Introduction : Most instruments used for QOL evaluation are not developedspecifically for SLE; hence, they present limited features when overallaspects of pediatric SLE and the responses to clinical changes areconsidered.Objective : To develop a quality of life questionnaire for adolescent with lupus(QoLMEAL). A disease-specific QOL questionnaire appropriate forevaluation of Thai adolescents diagnosed with SLE.Settings : University Hospitals in Bangkok.Research design : Multi-center descriptive study.Patients Thai adolescents aged 10 - 18 years old with SLE.Methods : The items were generated after an extensive review of the existingchildhood and adolescent SLE, HRQOL literature and HRQOLevaluation as well as an expert panel discussion. The revision ofitems comprising QoLMEAL was performed after the pre-testing in30 adolescents and parents. QoLMEAL has parallel adolescent andparent reports with a 5-scale for responses. Field-testing proceeds at4 collaborating medical centers in Thailand. Assigned physiciansassessed SLE activity and damage.Results : One hundred and twenty-eight adolescents with SLE and 123 parentsparticipated. Mean age (SD) of the patients was 14.5 (1.9) years.A total of 66 items and 8 domains covering physical health, dailyactivities, family, treatment, emotional health, social, schooling, andfinance were identified. QoLMEAL has acceptable content, convergent,and discriminant validity. A Cronbach’s coefficient alpha of QoLMEALis 0.94. Moderate correlation in overall domains was found betweenadolescent and parent reports (r = 0.62, P < 0.01). Physical health,daily activities, and treatment domains have small correlation withlupus activity or no correlation with damage indices.Conclusion : QoLMEAL could be a SLE-specific HRQOL instrument with 66 itemsacross 8 domains for use in SLE adolescents in Thailand.

Publisher

Faculty of Medicine, Chulalongkorn University

First Page

675

Last Page

687

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