Abstracts

Rationale: In the US, there is estimated to be > 700,000 Hispanic people living with epilepsy (HPwE). A survey of 760 Spanish-speaking adults found that 21% reported no awareness of epilepsy and 53% stated their family was likely to hide epilepsy (Sirven JI, et al. Epilepsy Behav 2005;7:259-65). Hispanic CARE is a multi-phased research program to better understand the experience of HPwE. In this phase of the program, key informant interviews were conducted to investigate the unique characteristics of providing care for HPwE, identify care gaps from the provider perspective, and better understand the relationship between HPwE and community health care stakeholders.

Methods: From 2018 to 2019, authors interviewed 21 health care stakeholders working in communities with mainly Hispanic populations. Eleven interviews were conducted: 5 individual and 6 group; length: 60–90 mins each. Key informants: 10 epileptologists, 1 neurologist, 1 pharmacist, 2 community clinic directors, 2 case managers, 2 social workers, 2 advocacy group directors, and 1 director of a local association of Hispanic providers. Semi-structured interviews were conducted to evaluate provider perceptions of care gaps for HPwE around several core topics: interacting with the medical system, medication, seizures, triggers and auras, education, telling people, and hope. Thematic analysis of the interview notes was conducted. Key informant comments were tallied and grouped into common themes to facilitate analysis.

Results: Seven major themes were identified: patient education is needed (36 mentions), limited access to epilepsy care (21 mentions); health care provider (HCP) education is needed (17 mentions), care is not structured for the Hispanic family (14 mentions), doctor-patient relationship is paternalistic (12 mentions), the impact of stigma is unaccounted for by providers (11 mentions), and fear plays a role in decision-making (6 mentions). Insights showed that patient education resources in Spanish are limited and do not reflect the family dynamic of Hispanic culture. Access to care is limited by language proficiency, patient fear, and lack of health insurance. Hispanics are likely to be managed by primary care providers, who may require further epilepsy training. HCPs may not account for stigma or unique Hispanic community beliefs about epilepsy, indicating an educational need for improved cultural competence. Results also suggest that the Hispanic population is heterogeneous and disease management is dependent upon degree of acculturation.

Conclusions: Interviews with health care stakeholders revealed care gaps that may negatively impact health outcomes for HPwE. Hispanic ethnicity and/or having limited English language skills is associated with greater care gaps for HPwE. Further research with HPwE and caregivers is needed to validate health care stakeholders’ perceived care gaps in this subpopulation.

Funding: Please list any funding that was received in support of this abstract.: UCB Pharma-funded.