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.