Epilepsy: Stigma and Management from Pakistan’s Perspective

Abstract

Introduction: Epilepsy is one of the chronic neurological disorders that have been an increasing burden to the developing countries. According to a systematic review of the magnitude, causes, and intervention strategies, 50 million people worldwide have epilepsy and approximately 90% of them are living in developing countries. According to WHO, 6 to 8 million people with epilepsy with addition of approximately 50,000 new cases annually and 3 to 4 million (assuming a national average treatment gap of 50%) remain untreated. In a poor resource country like Pakistan, epilepsy remains as a public health challenge. This study aimed to assess epileptic patient's knowledge, attitude, and practice for the management of epilepsy and to identify the needs of epileptic patients for the management of epilepsy. Methods: A cross-sectional study is conducted through a structured questionnaire consisting of 35 items during Jan-April 2013 in Karachi, Pakistan. Data is collected from the epileptic patients coming to the public health hospitals of Karachi for treatment and analysed through SPSS version 17.0. Results: A total 150 individuals were interviewed including 47% males and 53% females. Majority of them were under 20-29 age groups. The knowledge regarding epilepsy causation was minimal, 49.3% respondents considered it as a curable disease while 40% respondents considered it as a contagious disease. 60% reported super natural forces causing the disease followed by 55% respondents which reported the causation is due to some bad deeds. Emotional disturbance (66%) was the major triggering factor for epileptic fit among the respondents. Loss of Consciousness (85%), Urine Incontinence (70%), Salivation and Drooling (67%) were reported to be the major symptoms of epilepsy. Smelling of a shoe (71%) reported to be as the first measure during an epileptic fit. The most common complementary and alternative therapies used in the treatment of epilepsy included faith healers (80%), ayurvedic medications (57%) and homeopathy (10%) along with Modern drugs (63%). Poor socio-economic conditions, lack of education, religious concepts, and non-compliance from patient as well as from physicians were the main causes of treatment gaps. Conclusion: Mostly Patients with Epilepsy have religious beliefs and erroneous perception of the disease which negatively influences the epilepsy management and increases the treatment gaps. Patients with epilepsy require same medical attention as in any other illness. Awareness programs should focus on the acceptance of epileptic patients in the community not only to improve the quality of life of epileptic patients but also their families and for reducing stigmatization of epileptic patients. The main success factor for treatment of epilepsy lies in awareness, and efficient and effective utilization of resources for epilepsy management.