Patient-Validated Content of Epilepsy-Specific Quality-of-Life Measurement
Article first published online: 3 AUG 2005
Volume 38, Issue 2, pages 233–236, February 1997
How to Cite
Gilliam, F., Kuzniecky, R., Faught, E., Black, L., Carpenter, G. and Schrodt, R. (1997), Patient-Validated Content of Epilepsy-Specific Quality-of-Life Measurement. Epilepsia, 38: 233–236. doi: 10.1111/j.1528-1157.1997.tb01102.x
- Issue published online: 3 AUG 2005
- Article first published online: 3 AUG 2005
- Accepted September 20, 1996.
- Quality of life measures;
Summary: Purpose: To study the effects of epilepsy from the patients’perspective and assist determination of content validity of health-related quality-of-life (HRQOL) measures.
Methods: We asked 81 consecutive patients with moderately severe epilepsy to list in order of importance their concerns of living with recurrent seizures. To minimize investigator bias, patients completed the procedure in a private setting without staff involvement.
Results: Twenty-four distinct domains were generated by the patients. Concerns about driving (64%), independence (54%), employment (51%), social embarrassment (36%), medication dependence (33%), mood/stress (32%), and safety (31%) each were listed by >30% of patients. Driving was listed as the most important concern by 28% of patients, followed by employment (21%), independence (9%), safety (6%), antiepileptic-drug side effects (5%), seizure unpredictability (5%), and seizure aversion (5%).
Conclusions: The effect of epilepsy on HRQOL is not vague or obscure from the patients’perspective but is defined by a limited number of domains. Independence is an important concern that may not be evaluated adequately by currently available HRQOL instruments.