Development of disease-specific health-related quality of life questionnaire for Thai adolescents with systemic lupus erythematosus (SLE)

Abstract

Introduction : Most instruments used for QOL evaluation are not developed specifically for SLE; hence, they present limited features when overall aspects of pediatric SLE and the responses to clinical changes are considered.

Objective : To develop a quality of life questionnaire for adolescent with lupus (QoLMEAL). A disease-specific QOL questionnaire appropriate for evaluation 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 existing childhood and adolescent SLE, HRQOL literature and HRQOL evaluation as well as an 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 4 collaborating medical centers in Thailand. Assigned physicians assessed SLE activity and damage.

Results : One hundred and twenty-eight adolescents with SLE and 123 parents participated. Mean age (SD) of the patients was 14.5 (1.9) years. A total of 66 items and 8 domains covering physical health, daily activities, 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 in overall domains was found between adolescent and parent reports (r = 0.62, P < 0.01). Physical health, daily activities, and treatment domains have small correlation with lupus activity or no correlation with damage indices.

Conclusion : QoLMEAL could be a SLE-specific HRQOL instrument with 66 items across 8 domains for use in SLE adolescents in Thailand.