Elsevier

Epilepsy & Behavior

Volume 17, Issue 1, January 2010, Pages 46-49
Epilepsy & Behavior

Patient beliefs about epilepsy and brain surgery in a multicultural urban population

https://doi.org/10.1016/j.yebeh.2009.09.022Get rights and content

Abstract

We assessed beliefs about epilepsy and brain surgery and the use of alternative epilepsy treatments in a culturally diverse population of people with epilepsy (PWE). Data were obtained from a structured questionnaire administered to 109 PWE treated at a single epilepsy center. Patients were born in 17 countries on five continents. Most patients identified culturally with the Caribbean (41%), United States (39%), or Latin America (9%). Sixty-nine percent of patients endorsed at least one of five stigma-related questions, and 77% used at least one alternative epilepsy treatment. Brain surgery was rated as having a mean dangerousness of 8.3 (on a scale of 1 to 10) among the 94 patients with no history of neurosurgery. In addition, 51% of these patients would not consider surgical treatment even if it were guaranteed to stop their seizures without causing deficits. Educational efforts aimed at reducing both the stigma associated with epilepsy and the fear of resective epilepsy surgery are needed.

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)

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