Prevalence of active epilepsy and health-related quality of life among adults with self-reported epilepsy in California: California Health Interview Survey, 2003

Purpose: To examine the prevalence of self-reported epilepsy and active epilepsy, associated burden of impaired health-related quality of life, risk factors, and access to care in adults with self-reported epilepsy, and those classified as having active epilepsy with and without recent seizures. Methods: We analyzed data from adults aged >= 18 years (n= 41,494) who participated in the 2003 California Health Interview Survey (CHIS). Results: In California, 1.2% of adults reported ever being told they had epilepsy or seizure disorder, and 0.7% were classified as having active epilepsy. About three-fourths of adults with active epilepsy with recent seizures reported fair or poor health status. Adults with active epilepsy with recent seizures reported almost two weeks of poor physical or mental health and activity limitation days compared with two to 4 days per month in those without epilepsy. Among adults with active epilepsy and recent seizures, about one-quarter reported not taking any medicine to control their seizure disorder or epilepsy. About one-third reported physical disability/unable to work compared to a small proportion of the general population. The majority of adults with active epilepsy reported having a regular source of medical care. Conclusion: Our findings highlight the burden of epilepsy among adults in California. CHIS serves as a model demonstrating the value of including questions about epilepsy on public health surveillance systems to ascertain the burden of the disorder and to guide intervention research and public policy to improve HRQOL in people with epilepsy.