Patient-validated content of epilepsy-specific quality-of-life measurement.
OBJECTIVE
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.
Gilliam
F
F
UAB Epilepsy Center, Department of Neurology, University of Alabama at Birmingham 35294, USA.
Kuzniecky
R
R
Faught
E
E
Black
L
L
Carpenter
G
G
Schrodt
R
R
D000203:Activities of Daily Living; D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D001334:Automobile Driving; D017281:Cost of Illness; D004827:Epilepsy / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D011569:Psychiatric Status Rating Scales; D011788:Quality of Life; D012720:Severity of Illness Index