Summary: 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 3 1 -item questionnaire (QOLIE-3 1, version 1 .O) resulted, comprising seven subscales covering general and epilepsy-specific domains. Subscale and total scores can be calculated. The subscales were grouped into two factors: EmotionallPsychological 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 US.-English into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and U.K. English The individual patient's perspective has become an integral aspect of health care assessment (1). In epilepsy, clinicians are careful to obtain a social history along with physical and neurological examinations and medical history. The chronic nature of epilepsy, like that of most neurological disorders, often results in long-term relationships among the neurologist, the patient, and the patient's family. However, with recent changes in medical care delivery, less time is available to learn about the impact of the disorder on the patient's life. At the same time, the concept of quality of life (QOL) assessment has led to development of generic and disease-specific questionnaires to evaluate areas of concern to patients (2).The purpose of addressing QOL include improving the quality of patient care, differentiating among treatment Accepted July 17, 1997. options, and evaluating the allocation of health care resources. The major domains of QOL are physical, psychological, and social issues (3). These areas go well beyond the traditional assessment of seizure frequency and severity, and adverse effects of medications, toward an understanding of the impact of epilepsy on daily life (1).A variety of approaches have been used to assess QOL issues for people with epilepsy (2). Unified questionnaires [e.g., QOLIE-89 (4), ESI-55 ( 5 ) ] and batteries of tests [e.g., Liverpool QOL Battery (6)] have been used for detailed research programs. However, to conduct multinational epilepsy studies that include assessments of QOL requires an instrument that has been rigorously translated and adapted to the culture of each country in which it will be used. Such instruments will allow researchers to compile and aggregate QOL data across sample populations from different countries. The process is complicated not only by the wide differences in the concept of what constitutes "health" among cultures,
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