Validation of the Sri Lankan Health-Related Quality-of-Life Index for pre-schoolers (SLHQL-P) and school age (SLHQL-S) children with epilepsy

ABSTR A C T Introduction: Health-related quality of life (HRQL) in children and adolescents remains an underappreci-ated problem in Asian region, due to lack of culturally sound HRQL measures. This paper describes the validation process of two age-specific, proxy-rated HRQL indexes namely Sri Lankan Health-Related Quality-of-Life Index for preschoolers (SLHQL-P) and school age children (SLHQL-S) with epilepsy. Methods: Primary caregivers of children and adolescents with epilepsy aged 1-18 years from three dis-tricts in Sri Lanka were invited to fill the SLHQL-P (for 1-5 years) and SLHQLS (for 6-18 years). It was re-administered to a subset of consenting primary caregivers after an interval of two weeks. Scientific soundness of SLHQL-P and SLHQL-S were established based on causal indicator model. Results: Total of 98 and 169 primary caregivers responded to SLHQL-P, SLHQL-S respectively. Final ques-tionnaires of SLHQL-P and SLHQL-S consists of 26, 57 items respectively in three multi-item domains measuring the child's physical functioning (6, 9 items), psychological functioning (6, 31 items) and social functioning (14, 17 items) with higher scores reflecting better HRQL. Construct validity was established by several methods including strong relationship with seizure severity. Good test-retest reliability was also demonstrated for both SLHQL-P and SLHQL-S (r = 0.77, 0.938) Conclusions: Both SLHQL-P and SLHQL-S are feasible, reliable and valid instruments to measure HRQL in children and adolescents with epilepsy in clinical as well as research settings in Sri Lanka. (c) 2021 Elsevier Inc. All rights reserved.