Abstracts

Rationale: The purpose of this study was to identify potential cultural, financial, and linguistic barriers to care in patients with epilepsy and develop a needs assessment. This was conducted via a survey among pediatric and adult patients in English and Spanish, with caregiver participation, when necessary, at three different clinics: 1) pediatric neurology, 2)private university adult and 3)adult safety net clinic.


Methods: The survey was initially developed by bilingual adult and pediatric neurologists with special expertise in epilepsy, neuropsychology and epidemiology. It was translated into Spanish and “back translated” into English to assess for any discrepancies in the two languages. The survey was pilot-tested and modified, descriptive statistics and chi-square analysis were performed to look at differences between groups.


Results: Out of 104 participants, 58(55.8%) identified as Hispanic, 27(26%) as Non-Hispanic(NH) White and 16(15.4%) as NH-Black; 68(65.4%) chose English as their primary language and 36(34.6%) chose Spanish. Seizure burden was high, with 38.5% of patients having more than 10 focal seizures and 12.5% having more than 10 generalized tonic-clonic seizures per year. While 99(95.2%) had an EEG at least once in their lifetime, only 55(52.9%) had been admitted to EMU. 55(52.9%) had been offered surgery and of these, 12(66.7%) had a VNS, 3(16.7%) an RNS, 1(5.6%) a DBS, and 1(5.6%) resection. Insurance was as follows: Medicaid 64(61.5%), Harris Health Financial Assistance Program “Goldcard” 12(11.5%), private insurance 17(16.3%), and uninsured 3(2.9%). Medical care had to be postponed due to insurance problems in 24(23.1%) or cost in 24(23.1%) and medications were postponed in 20(19.2%) due to cost. Overall, 5(4.8%) reported feeling like their ethnic background created a barrier towards their care. Qualitative analysis of themes in written comments were notable for long appointment waiting times, insurance problems, and difficulty reaching medical staff. Three Spanish-speaking caregivers reported experiencing ethnic discrimination. Additionally, feeling dismissed by providers was reported by two patients and three caregivers. Chi-square analysis did not reveal any significant differences between Hispanic and non-Hispanic patients in terms of seizure burden, utilization of care as described by ER visits (p=0.18), EMU (p=0.47) or surgical evaluation (p=0.64). Further analyses are ongoing.


Conclusions: Our preliminary work on a diverse sample of adult and pediatric patients with epilepsy at three sites with a large proportion of Hispanic patients, many of whom had intellectual or physical disabilities, indicated that care appears to be similar among Hispanic and non-Hispanic patients. This suggests that the quality of care offered in these clinics in Texas is culturally competent and meeting patient needs. However, in written comments, a small number of Spanish-speaking caregivers reported discrimination. Additionally, the burden of epilepsy, despite multidisciplinary care, remains high. Further research is needed to optimize care in this population.


Funding: Funding: Baylor College of Medicine.