Patient-reported outcomes measurements in epilepsy

Abstract

This review was designed to explore and review the range of patient-reported outcomes used to assess people with epilepsy. Literature searches were conducted through EMBASE.com and supplemented with hand searching of relevant articles. References obtained through hand searches were compared with EMBASE.com citations until we were confident that the review had reached a point of saturation. The search included English language papers published between January 1997 and March 2007. Searching through EMBASE.com yielded a total of 110 hits and the hand searches identified 35 potentially relevant studies. A total of 61 studies were considered relevant to the current review and were included in the study. Several instruments that have been designed and validated to measure patient-reported outcomes in an epilepsy population are currently being used, including the Quality of Life in Epilepsy (QOLIE)-89 and -31, the Liverpool Seizure Severity Scale and the Washington Psychosocial Seizure Inventory. In addition, the QOLIE-adolescent (QOLIE-AD)-48 and the Adolescent Psychosocial Seizure Inventory have been designed for use with adolescent epileptic patients. We found a paucity of valid condition-specific instruments assessing patient preference and patient satisfaction in this population. Several condition-specific instruments exist to measure patient-reported outcomes in epilepsy, specifically in the areas of health-related quality of life, patient-reported symptoms and psychosocial functioning. However, measures designed to assess other areas of patient-reported outcomes, such as patient preference and satisfaction, are poorly developed.

Keywords::

• epilepsy
• health-related quality of life
• patient preference
• patient-reported outcomes
• patient-reported symptoms
• patient satisfaction
• psychosocial functioning

Financial disclosure

The authors have no relevant financial interests, including employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties related to this manuscript.