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Assessment of Quality of Life in People with Epilepsy: Some Practical Implications

Summary: Growing recognition of the need to assess the impact of epilepsy on psychosocial functioning has led to a number of initiatives to quantify quality of life (QOL) in patients with this condition. To understand the impact of epilepsy and its treatment, physical, social, neuropsychological, and psychological functioning aspects must be considered. It also is apparent from previous research work that measures of QOL should be comprehensive enough to address the question under consideration, but also simple and as brief as possible. A number of QOL measures for assessing the impact of epilepsy and its treatment exist, such as the Washington Psychosocial Seizure Inventory, the Social Effects Scale, the Epilepsy Surgery Inventory, the Quality of Life in Epilepsy (QOLIE) questionnaire, and the Liverpool QOL Battery. These measures have in most cases been shown to be reliable, valid, and sensitive to change, although at the current stage of development, some are better validated than others. It is generally agreed that the best approach is to use a standard generic instrument with disease‐specific additions. Selection of a measure already in existence is recommended, as the process of producing a new measure is costly in terms of both resources and time. Some consideration also needs to be given to factors such as the process of administration (e.g., self‐completion or administration at interview) or the timing of data collection. Then questions such as the cross‐cultural applicability of QOL measures and the real relevance of the changes remain to be answered. It is hoped that, over the next few years, significant progress will be made in addressing these issues.