Development of Quality of Life Tool for Children Diagnosed with Epilepsy-A Pilot Trial

Abstract

Introduction: Epilepsy is a neurological condition in which child has a recurrent seizure. It results in imbalance of neurotransmitter. It has an impact on various aspects of a child like physical, social, behaviour, psychological and intellectual. Epilepsy is one of the common disease which present among children. Existing Quality of Life (QOL) tool do not cover the issues significant to Indian children. Aim: To develop a QOL tool for children diagnosed with epilepsy. Materials and Methods: This study was a sequential exploratory mixed method study. It included qualitative and quantitative study. In qualitative phase, the information was collected by using in-depth interview of participants. Interview data were analysed by using conventional content analysis method and themes, subthemes were created. On the basis of it, a pool of items for the questionnaire was developed. In quantitative phase, psychometric property of the questionnaire was evaluated by using face, content and constructs validity. The reliability of tool assessed by internal consistency and Cronbach’s alpha. Total 15 and 20 subjects were involved in qualitative and quantitative phase respectively. Results: Qualitative method consist of 3 steps- in-depth review of literature, participant’s interview and expert opinion. At the end of phase I, a draft of 84 questionnaires as item pool generation developed. In phase 2, an expert panel reviewed 84 items for relevance, language, wording and duplication. 30 items were deleted on the basis of expert opinion, Item Content Validity Index (I-CVI) and Scale Content Validity Index (S-CVI). Now, 54 items were administered to 20 participants. Based on the participants responses investigator draw a scree plot based on eigen value of above 1. These 5 domains explained 76.42 % of the total variance. Total 9 items were deleted from pool of 54 items on the basis of item total correlation coefficient and inter-item correlation. Final 45 items were classified as per specific domain. The final draft had a Cronbach’s alpha value of 0.876. Conclusion: Majority of QOL tool are not applicable to Indian population due to geographical and cultural differences. So the aim of this study was to develop a tool which benefited to Indian population. In this study, the final draft consists of 5 components with 45 items as per analysis. This newly developed tool will help the health care provider to assess the QOL of epileptic children.