Epilepsy is a central nervous system disorder characterized by unprovoked, recurrent seizures that may affect physical, mental, or behavioral functioning.1 In 1995, approximately 2.3 million persons residing in the United States had epilepsy. Approximately 181,000 new cases of epilepsy are diagnosed each year, with annual estimated costs of $12.5 billion in medical care and lost productivity.2,3 Because epilepsy has a substantial impact on health (e.g., physical and psychosocial difficulties, side effects of anticonvulsant therapy, lifestyle restrictions, and perceived stigmatization),1,4-6 self-reported physical and mental health-related quality of life (HRQOL) measures are useful in gauging the impact of epilepsy on persons with the disorder. Persons with chronic health disorders are at risk for impaired HRQOL.7 Few studies have examined the HRQOL of persons with epilepsy,5,6 and none has used a representative sample of adults residing in the United States. This report examines data from the 1998 Texas Behavioral Risk Factor Surveillance System (BRFSS) that included a question about epilepsy; findings indicate that persons with epilepsy reported substantially worse HRQOL than persons without epilepsy. Community-based interventions such as the Sepulveda Epilepsy Education Program that address medication self-management, psychosocial self-management, and other education interventions can improve the quality of life for persons with epilepsy.8
BRFSS is an ongoing, state-based, random-digit-dialed telephone survey of the civilian, noninstitutionalized population aged ≥18 years that tracks the prevalence of key health and safety-related behaviors and characteristics.9 BRFSS data are weighted to reflect the age, sex, and racial/ethnic distribution of the state's estimated population during the survey year. The standard survey used in all states includes four self-rated questions: general health status, number of days during the 30 preceding the survey when physical health was not good, number of days during the preceding 30 when mental health was not good, and number of days during the preceding 30 when activity was limited as a result of poor physical or mental health. Unhealthy days are the total number of days when physical and mental health were not good, with the total not to exceed 30 days. In 1998, Texas added an optional quality of life module to its healthy days' measures that asked respondents about the nature of their activity limitations and the number of days of pain, depression, anxiety, insufficient sleep or rest, and overall vitality during the preceding 30 days. One question was added about epilepsy.
In Texas in 1998, 52 (1.8%) (95% confidence interval = 1.4-2.1) of 3355 respondents reported having epilepsy. These respondents did not differ in age and sex from those without epilepsy. Those with epilepsy reported substantially worse HRQOL than those without epilepsy; 18 (45.9%) respondents with epilepsy reported fair or poor health compared with 570 (18.5%) of 3290 respondents without epilepsy.* Compared with those without epilepsy, respondents with epilepsy reported 4.4 more physically unhealthy days, 5.2 more mentally unhealthy days, 6.4 more overall unhealthy days, 4.0 more recent activity limitation days, 6.8 more days of pain, 5.6 more days of depression, 5.2 more days of anxiety, 3.5 more days of insufficient sleep or rest, and 3.3 fewer days of vitality in the 30 days presurvey.
On the basis of HRQOL responses to the 1998 Texas BRFSS questionnaire, respondents with epilepsy had substantially worse HRQOL than respondents without epilepsy based on valid HRQOL measures.10 These findings are comparable with the number of unhealthy days among BRFSS respondents from eight other states with arthritis, heart problems, diabetes, and cancer.7 Additional study is needed to determine whether the high number of reported days with pain in persons with epilepsy is associated with seizure severity, injuries from seizures, unintended effects of anticonvulsant medications, or other factors. The high number of days with depression and anxiety suggests that this population has high levels of anxiety and low levels of life fulfillment.1,5,6
The findings in this report are subject to at least four limitations. First, BRFSS excludes persons without telephones, in institutions (e.g., nursing homes and the military), and persons aged <18 years. Second, BRFSS may underrepresent the severely impaired because time and functional capacity are required to participate in BRFSS. Third, it is unclear whether lower levels of HRQOL in persons with epilepsy in this study are a result of the disorder or factors unrelated to epilepsy. Finally, because the sample size of respondents with epilepsy was small, comparisons by sex and racial/ethnic subgroup were limited.
To improve the HRQOL of persons with epilepsy, the International Commission on Outcome Measurement in Epilepsy has recommended further research into the HRQOL among persons with epilepsy.6 In addition, BRFSS and other surveillance systems can provide data on the health status, behaviors, and HRQOL of persons with epilepsy. State and local health departments can collaborate with health-care providers to develop and promote comprehensive and continual care among minorities, children, the elderly, and other underserved populations. Schools, worksites, and places of worship can educate the public to destigmatize epilepsy, and interventions such as the Sepulveda Epilepsy Education Program can improve medication self-management and psychosocial self-management of epilepsy.8
Health-Related Quality of Life Among Persons With Epilepsy—Texas, 1998. JAMA. 2001;285(7):878. doi:10.1001/jama.285.7.878-JWR0221-3-1