COSMIN database

Patient-reported outcomes measurements in epilepsy

Stafford, M., Gavriel, S., and Lloyd, A.
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 and supplemented with hand searching of relevant articles. References obtained through hand searches were compared with 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 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.
Expert Rev Pharmacoecon Outcomes Res
1744-8379 (Electronic)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Children (0-18)
Seniors (65+)
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
APSI - Adolscent Psychosocial Seizure Inventory
BPSE - Bonner psychosoziale skalen für epilepsie
LSSS - Liverpool Seizure Severity Scale
PSQ II / III - Patient Satisfaction Questionnaire II / III
QOLAS - Quality of Life Assessment Schedule
QOLIE-31 - 31-item Quality of Life in Epilepsy Inventory
QOLIE-89 - Quality of Life in Epilepsy Inventory 89 items
QOLIE-AD-48 - Quality of Life in Epilepsy Inventory for Adolescents (epilepsy)
Quality of Life Model for Epilepsy
WPSI - Washington psychosocial seizure inventory