Abstract
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.
Highlights
Health related quality of life (HRQL) is used as an outcome measure to describe the disease burden in epilepsy
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
Measurement of quality of life (QOL) outcomes is of potential value in evaluating interventions, comparing outcomes in clinical trials, commissioning programmes of care, assessing outcomes of new treatments and audits[3,4,5,6]
Summary
Health related quality of life (HRQL) is used as an outcome measure to describe the disease burden in epilepsy. The World Health Organization (WHO) defines QOL as “the individual’s perception of their position in life, in the context of culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns”[7]. This multidimensional concept follows from their widely accepted definition ofhealth’ as “a state of complete physical, mental, and social wellbeing and not merely the absence of disease or infirmity”[8]. There are several generic and epilepsy specific HRQL instruments with defined validity and reliability for use in adults and children with epilepsy. There is no culturally sound, population specific HRQL instrument for adults or children with epilepsy in Sri Lanka
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