Knowledge and beliefs about epilepsy genetics among Hispanic and non-Hispanic patients

Shannon Trujillo; John B Wetmore; Itzel A Camarillo; Sylwia Misiewicz; Halie May; Hyunmi Choi; Karolynn Siegel; Wendy K Chung; Jo C Phelan; Lawrence H Yang; Cheng-Shiun Leu; Amanda L Bergner; Ruth Ottman

doi:10.1111/epi.17701

Knowledge and beliefs about epilepsy genetics among Hispanic and non-Hispanic patients

Epilepsia. 2023 Sep;64(9):2443-2453. doi: 10.1111/epi.17701. Epub 2023 Jul 6.

Authors

Shannon Trujillo¹, John B Wetmore^{2

3}, Itzel A Camarillo², Sylwia Misiewicz², Halie May^{4

5}, Hyunmi Choi⁶, Karolynn Siegel⁷, Wendy K Chung^{4

8}, Jo C Phelan⁷, Lawrence H Yang^{3

9}, Cheng-Shiun Leu¹⁰, Amanda L Bergner^{11

12}, Ruth Ottman^{2

3

6

13}

Affiliations

¹ Division of Maternal-Fetal Medicine, Department of Obstetrics, Gynecology and Reproductive Sciences, Rutgers Robert Wood Johnson Medical School, New Brunswick, New Jersey, USA.
² Gertrude H. Sergievsky Center, Columbia University Irving Medical Center, New York, New York, USA.
³ Department of Epidemiology, Columbia University Mailman School of Public Health, New York, New York, USA.
⁴ Department of Medicine, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
⁵ Institute for Genomic Medicine, Columbia University Irving Medical Center, New York, New York, USA.
⁶ Department of Neurology, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
⁷ Department of Sociomedical Sciences, Columbia University Mailman School of Public Health, New York, New York, USA.
⁸ Department of Pediatrics, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
⁹ School of Global Public Health, New York University, New York, New York, USA.
¹⁰ Department of Biostatistics, Columbia University Mailman School of Public Health, New York, New York, USA.
¹¹ Department of Genetics and Development, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
¹² Genetic Counseling Graduate Program, Columbia University Vagelos College of Physicians and Surgeons, New York, New York, USA.
¹³ Division of Translational Epidemiology and Mental Health Equity, New York State Psychiatric Institute, New York, New York, USA.

PMID: 37353999
PMCID: PMC10529985 (available on 2024-09-01)
DOI: 10.1111/epi.17701

Abstract

Objective: Hispanics continue to face challenges when trying to access health care, including epilepsy care and genetic-related health care services. This study examined epilepsy genetic knowledge and beliefs in this historically underserved population.

Methods: Questionnaires were completed by 641 adults with epilepsy without identified cause, of whom 122 self-identified as Hispanic or Latino and 519 as non-Hispanic. Participants were asked about their views on the contribution of genetics to the cause of their epilepsy ("genetic attribution"), optimism for advancements in epilepsy genetic research ("genetic optimism"), basic genetic knowledge, and epilepsy-specific genetic knowledge. Generalized linear models were used to compare the two groups in the means of quantitative measures and percents answered correctly for individual genetic knowledge items. Analyses were adjusted for age, sex, education, religion, family history of epilepsy, and time since last seizure.

Results: Hispanics did not differ from non-Hispanics in genetic attribution, genetic optimism, or number of six basic genetic knowledge items answered correctly. The number of nine epilepsy-specific genetic knowledge items answered correctly was significantly lower for Hispanics than non-Hispanics (adjusted mean = 6.0 vs. 6.7, p < .001). After adjustment for education and other potential mediators, the proportion answered correctly was significantly lower for Hispanics than non-Hispanics for only two items related to family history and penetrance of epilepsy-related genes. Only 54% of Hispanics and 61% of non-Hispanics answered correctly that "If a person has epilepsy, his or her relatives have an increased chance of getting epilepsy."

Significance: Despite large differences in sociodemographic variables including education, most attitudes and beliefs about genetics were similar in Hispanics and non-Hispanics. Epilepsy-specific genetic knowledge was lower among Hispanics than non-Hispanics, and this difference was mostly mediated by differences in demographic variables. Genetic counseling should address key concepts related to epilepsy genetics to ensure they are well understood by both Hispanic and non-Hispanic patients.

Keywords: genetic attribution; genetic essentialism; genetic literacy; risk perception.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
Educational Status
Epilepsy* / epidemiology
Epilepsy* / genetics
Female
Health Knowledge, Attitudes, Practice* / ethnology
Hispanic or Latino* / genetics
Hispanic or Latino* / statistics & numerical data
Humans
Male
Surveys and Questionnaires
United States / epidemiology

Abstract

Publication types

MeSH terms

Grants and funding