Abstracts

Rationale: Most health literacy research has focused on clinical outcomes and patient involvement. The research examining the impact of health literacy on quality of life (QoL) is growing, but remains sparse when investigating people with epilepsy. The aim of this study was to examine associations between health literacy, the social determinants of health, and social isolation on QoL for individuals with treatment-resistant epilepsy (TRE). Methods: Baseline data were collected from adult patients with TRE enrolled in the UAB CBD Program between 4/1/2015 and 5/3/2018 using standardized questionnaires.Health literacy was measured with three questions: does P have someone help them read hospital materials?; does P have problems learning about their medical condition?; how confident is P filling out forms alone? Items were used to create a composite index with values 0-12: higher score is indicative of greater health literacy (a=0.9).Financial strain was gauged via money situation (“Comfortable with extra” to “Cannot make ends meet”); food availability, difficulties paying for AEDs (“sometimes or often” vs. “never”). Four social isolation items were used in this study: patient has help when sick; has someone to retrieve them if stranded; does not often get invited to do things; has someone to share their private worries with (“probably” or “definitely false” to “probably” or “definitely” true). QoL was assessed using the QOLIE-89; Adverse Effects Profile (AEP), and Profile of Mood States (POMS) were used as controls. Analyses included Pearson correlations, Chi-square, t-test, ANOVA, and OLS regression (a=0.1). Results: The sample (n=74) was 53% female and 93% white; mean age 32 years (±12.75); 50% reported a total annual family income <$60,000 and 47% completed Special Education. The health literacy index, QOLIE-89, AEP, and TMD means were 2.55 (±3.54), 48.08 (± 20.69), 40.89 (±10.42), and 45.64 (±34.79), respectively. Some patients reported higher levels of social isolation—no help when sick (58.11%), not invited to do things with others (36.49%), no assistance if stranded (2.7%), and no one with whom to share private worries (10.81%). Bivariate associations showed a positive relationship between health literacy scores and quality of life (p=0.087) and age (p=.0004) and education (p=.0001), and an inverse relationship with adverse effects (p=.041). QoL increased with improved money situation (p=.009) and food availability (p=.057). The social isolation measures did not produce a statistically significant relationship with QoL, but having help when sick was negatively associated with health literacy scores (p=.023) and race (p=.047). Our final nested regression model for QoL showed main effects for race (p=.032), sex (p=.05), food availability (p=.009), and TMD (p=.012). Conclusions: Race, sex, decreased food availability, and higher scores on TMD are associated with diminished QoL among adult patients participating in the CBD program. Compared to the reference group (non-Hispanic White), Black/African-American patients scored 21.5 points lower on the QOLIE-89. Similarly, women averaged 11.1 points lower than the male reference group. This is consistent with literature noting differences in QoL outcomes by gender and race and research showing TMD as a strong predictor of health-related quality of life. Further research examining the impact of caregiver versus patient self-report on social and outcome measures is needed.  Funding: EMB and JPS are Principal Investigators of the UAB CBD Program and receive salary support. BS receives salary support. MS and EB report no conflicts of interest.