Development and Cross‐Cultural Translations of a 31‐Item Quality of Life in Epilepsy Inventory

Purpose: We report the development of a questionnaire to assess health‐related quality of‐life (HRQOL) in people with epilepsy and the process of cross‐cultural translations of the questionnaire. Methods: A sample of 304 adults with epilepsy from 25 seizure clinics in the United States was used to derive an abbreviated questionnaire focusing on epilepsy‐related issues from a longer, 89‐item instrument (QOLIE‐89). A rigorous forward‐backward‐forward system was used for cross‐cultural translation. Results: A 31‐item questionnaire (QOLIE‐31, version 1.0) resulted, comprising seven subscales covering genral and epilepsy‐specific domains. Subscale and total scores can be calculated. The subscales were grouped into two factors: Emotional/Psychological Effects (seizure worry, overall QOL, emotional well‐being, energy/fatigue subscales) and Medical/Social Effects (medication effects, work‐driving‐social limits, cognitive function subscales). Cross‐cultural translations were made from U.S.‐English into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and U.K. English Versions 1.1. Conclusions: Our results support the reliability and validity of the QOLIE‐31 (U.S.‐English version 1.0) as a measure of HRQOLIE. Cross‐cultural translations into nine other languages make it feasible to use the QOLIE‐31 (version 1.1) in multinational clinical trials after validation in each population or concurrent with clinical trial.