Patient beliefs about epilepsy and brain surgery in a multicultural urban population
Introduction
Throughout the world, epilepsy—the disease once considered sacred [1] but more often viewed through the lenses of fear and superstition—remains poorly understood by the general public [2], [3], [4], [5], [6], [7], [8], [9], [10], [11], [12]. The appearance of a convulsive seizure, the peculiar behaviors that may accompany complex partial seizures, and the psychic phenomena that often constitute seizure auras have fueled millennia of epilepsy stigmatization. Folk, religious, or spiritual notions of its causes and treatments are common, especially in the developing world [2], [5], [8], [10], [11], [12], [13], [14]. Such beliefs are often in conflict with those of treating physicians trained in allopathic medicine. There is strong anecdotal evidence that beliefs about brain surgery are often culturally based and that resective brain surgery is frequently viewed as a high-risk and low-benefit procedure.
Very little is known about such beliefs among people with epilepsy (PWE) living in the United States [5], and no studies have investigated whether beliefs about epilepsy differ between immigrant groups. Similarly, no studies have probed how PWE view the relative risk and benefit of brain surgery as a treatment option. If patients harbor false or unsubstantiated views of epilepsy surgery, then appropriate educational efforts could result in greater acceptance of this underused treatment [15].
We sought to assess beliefs about the stigma of epilepsy, causes of epilepsy, and risks of brain surgery, and to determine the use of alternative treatments for epilepsy, in a culturally and ethnically diverse population of PWE.
Section snippets
Methods
Patients 14 years or older attending subspecialty epilepsy clinics at an academic medical center in Brooklyn, NY, USA, were eligible for the study. Patients seen in these clinics have health insurance (predominantly Medicaid and/or Medicare) and full access to comprehensive epilepsy care. Inclusion criteria included a documented history of epilepsy and ability to understand and complete the research questionnaire. All eligible patients seen over a 5-month interval were given the opportunity to
Results
Demographic data for the 109 respondents are summarized in Table 1. Patient age ranged from 14 to 72 years. Patients were born in 17 countries on five continents, whereas their parents were born in 20 countries. The numbers of patients and parents born in each country are detailed in Supplementary Table 1. Of the 66 patients born in the United States, 28 (42%) identified culturally with another world region (Caribbean, 15; Latin America, 8; Africa, 3; Europe, 1; Pacific Islands, 1). Of the 96
Discussion
Most adults with epilepsy can lead seizure-free lives with appropriate antiepileptic drug (AED) treatment [16], and for those not rendered seizure-free with medication, epilepsy surgery is often a safe and highly effective alternative [17], [18]. Unfortunately, epilepsy surgery for medically uncontrolled temporal lobe epilepsy is “arguably the most underused of all effective therapeutic interventions” [15].
The results of this study help elucidate the basis for this treatment gap. Although prior
Acknowledgments
The work described in this article was supported in part by NIHK23NS046347 to A.C.G. This article was presented in abstract form at the 28th International Epilepsy Congress, Budapest, Hungary, June 2009. The authors thank Luba Nakhutina, Ph.D., for her assistance.
References (25)
- et al.
Knowledge of, perceptions of, and attitudes toward epilepsy among university students in Kuwait
Epilepsy Behav
(2009) - et al.
First population study of the general public awareness and perception of epilepsy in Bosnia and Herzegovina
Epilepsy Behav
(2009) - et al.
Epilepsy stigma perception in an urban area of a limited-resource country
Epilepsy Behav
(2007) - et al.
Meanings of epilepsy in its sociocultural context and implications for stigma: findings from ethnographic studies in local communities in China and Vietnam
Epilepsy Behav
(2008) - et al.
Factors contributing to the stigma of epilepsy
Seizure
(2005) - et al.
Knowledge, attitude, and practice of epilepsy in rural Sri Lanka
Seizure
(2002) - et al.
General public knowledge, attitudes, and practices with respect to epilepsy in the Batibo Health District, Cameroon
Epilepsy Behav
(2009) - et al.
Epilepsy patients’ perceptions about stigma, education, and awareness: preliminary responses based on a community participatory approach
Epilepsy Behav
(2007) - et al.
The association of stigma with self-management and perceptions of health care among adults with epilepsy
Epilepsy Behav
(2003) - et al.
Factors contributing to the use of complementary and alternative medicine by people with epilepsy
Epilepsy Behav
(2006)
Cited by (52)
Evolution in Epilepsy Surgery and the Need to Address a Public Health Crisis of Underutilization
2024, Neurosurgery Clinics of North AmericaIdentifying epilepsy surgery candidates with natural language processing: A systematic review
2023, Journal of Clinical NeuroscienceHealth Literacy in Neurosurgery: A Scoping Review
2022, World NeurosurgeryBurden of epilepsy in Latin America and The Caribbean: a trend analysis of the Global Burden of Disease Study 1990 – 2019.
2022, The Lancet Regional Health - AmericasCitation Excerpt :Other causes of early death in people living with epilepsy in Latin America reported were status epilepticus, brain tumours, stroke, suicide, pneumonia, and sepsis. 30 Finally, the stigma for people with epilepsy in LAC remains an issue,34 which could impair the willingness to seek treatment and rehabilitation and increase the consequent mortality and disability. Argentina and Uruguay had the lowest prevalence rate and the lowest burden of epilepsy in terms of DALYs and both YLD and YLL rates.
Ethical considerations in the surgical and neuromodulatory treatment of epilepsy
2022, Epilepsy and Behavior