Development and validation of a disease-specific health-related quality of life measure for thai adolescients with systemic lupus erythematosus

Abstract

Objectives:To develop a Quality of Life Measure for Adolescent with Lupus (QoLMEAL), a disease-specific QOL instrument, for individual patient evaluation in Thai adolescents aged 10-18 years with SLE. Methods: The items were generated after an extensive review of the existing childhood SLE and HRQOL literature and HRQOL measures as well as the expert panel discussion. The revision of items comprising QoLMEAL was performed after the pre-testing in 30 adolescents and parents. QoLMEAL has parallel adolescent and parent reports with a 5-scale for responses. Field-testing proceeds at four collaborating medical centers in Bangkok. Assigned physicians assessed SLE activity and damage. Results: 128 adolescents with SLE and 123 parents participated. A total of 66 items and 8 domains covering physical health, daily activity, family, treatment, emotional health, social, schooling, and finance were identified. QoLMEAL has acceptable content, convergent, and discriminant validity. A Cronbach’s coefficient alpha of QoLMEAL is 0.94. Moderate correlation was found between adolescent and parent reports (r=0.62, P < 0.01). Physical health, daily activity, and treatment domains have small correlation with lupus activity or no correlation with damage indices. Conclusion: The QoLMEAL is a validated SLE-specific HRQOL instrument with 66 items across 8 domains for use in SLE adolescents in Thailand.