Development of a pilot health related quality of life tool for Sri Lankan children with epilepsy

Introduction: Health related quality of life (HRQL) is used as an outcome measure to describe the disease burden in epilepsy.

Objective: To develop a multidimensional questionnaire to assess the HRQL of children and adolescents with epilepsy (CAWE) in rural Sri Lanka from their primary caregiver’s opinion.

Method: To generate items for pilot questionnaire, we conducted a qualitative study comprising 24 in-depth interviews with 13 primary caregivers of CAWE, 5 CAWE, 3 siblings of CAWE, 3 parents of healthy children, and 3 focus group discussions with 1 primary caregiver of CAWE and 2 key informants in 3 districts (Ampara, Monaragala, Hambantota) representing a multi-ethnic rural community in Sri Lanka. Constant comparison analysis of the interview transcripts was done manually. Construct utilized to develop the pilot questionnaire was HRQL corresponding to the impact of epilepsy and its treatment on daily life based on the primary caregivers’ assessment. From the qualitative data, 100 items distributed in 4 domains of HRQL was pooled initially. A 10 member expert panel did item reduction and observed content and face validity.

Results: The pilot questionnaire was composed of 34 questions in the 0-5 year age group and 60 questions in the 6-18 year age group. All items established good face and content validity.

Conclusion: This pilot questionnaire appears to be unique, culturally sound and population specific HRQL tool for children and adolescents with epilepsy in rural Sri Lanka.