Improving understanding, promoting social inclusion, and fostering empowerment related to epilepsy: Epilepsy Foundation public awareness campaigns--2001 through 2013.

It is a significant public health concern that epilepsy, the fourth most common neurological disorder in the United States, is generally poorly understood by both the public and those living with the condition. Lack of understanding may magnify the challenges faced by those with epilepsy, including limiting treatment opportunities, effective management of symptoms, and full participation in daily life activities. Insufficient awareness of epilepsy and appropriate seizure first aid among the public and professionals can result in insufficient treatment, inappropriate seizure response, physical restraint, social exclusion, or other negative consequences. To address the need for increased public education and awareness about epilepsy, the national Epilepsy Foundation, supported by the Centers for Disease Control and Prevention, has conducted yearly multifaceted public education and awareness campaigns designed to reach the broad population and targeted segments of the population including youth, young adults, racial/ethnic groups (i.e., African-, Hispanic-, and Asian-Americans), and people with epilepsy and their caregivers. Campaign channels have included traditional media, social media, and community opinion leaders and celebrity spokespersons. The key activities of these campaigns, conducted from 2001 to 2013, are summarized in this report.

Tracking psychosocial health in adults with epilepsy--estimates from the 2010 National Health Interview Survey.

OBJECTIVE: This study provides population-based estimates of psychosocial health among U.S. adults with epilepsy from the 2010 National Health Interview Survey. METHODS: Multinomial logistic regression was used to estimate the prevalence of the following measures of psychosocial health among adults with epilepsy and those without epilepsy: 1) the Kessler-6 scale of serious psychological distress; 2) cognitive limitation, the extent of impairments associated with psychological problems, and work limitation; 3) social participation; and 4) the Patient-Reported Outcome Measurement Information System Global Health Scale. RESULTS: Compared with adults without epilepsy, adults with epilepsy, especially those with active epilepsy, reported significantly worse psychological health, more cognitive impairment, difficulty in participating in some social activities, and reduced health-related quality of life (HRQOL). CONCLUSIONS: These disparities in psychosocial health in U.S. adults with epilepsy serve as baseline national estimates of their HRQOL, consistent with Healthy People 2020 national objectives on HRQOL.

Development and psychometric evaluation of the public health surveillance well-being scale.

PURPOSE: To develop and psychometrically evaluate the brief Public Health Surveillance Well-Being Scale (PHS-WB) that captures mental, physical, and social components of well-being. METHODS: Using data from 5,399 HealthStyles survey respondents, we conducted bi-factor, item response theory, and differential item functioning analyses to examine the psychometric properties of a pool of 34 well-being items. Based on the statistical results and content considerations, we developed a brief 10-item well-being scale and assessed its construct validity through comparisons of demographic subgroups and correlations with measures of related constructs. RESULTS: Based on the bi-factor analyses, the items grouped into both an overall factor and individual domain-specific factors. The PHS-WB scale demonstrated good internal consistency (alpha = 0.87) and correlated highly with scores for the entire item pool (r = 0.94). The well-being scale scores differed as expected across demographic groups and correlated with global and domain-specific measures of similar constructs, supporting its construct validity. CONCLUSION: The 10-item PHS-WB scale demonstrates good psychometric properties, and its high correlation with the item pool suggests minimal loss of information with the use of fewer items. The brief PHS-WB allows for well-being assessment on national surveys or in other situations where a longer form may not be feasible.