Quality of life in people with epilepsy in Sudan: An example of underserved communities in developing countries

Objectives: The aim of this study was to investigate the quality of life (QOL) in people with epilepsy (PWE) living in Khartoum State, Northern Sudan. The region offers a model of urban and suburban communities in developing countries. Methods: A cross-sectional study was carried out in the neurology clinic of Khartoum State Hospital and Omer Ibn Alkhatab Health Center in the suburb of Khartoum State. We interviewed PWE living in the city, the suburbs and adjacent villages. Our subjects were known to have been on antiepileptic drugs (AED) for at least 6 months. The impact of epilepsy on the QOL was assessed in the clinic using a 23-item questionnaire with graded scales and check-lists to explored demographic characteristics, seizure control, adverse effects of antiepileptic medication, physical harm, social and psychological impact and stigmatization. Results: Fifty-two females and 48 males between the ages of 10 and 80 years were interviewed. Sixty percent of participants were between 20 and 39 years of age. While on AED treatment, 63% developed at least one seizure at any given time, 49% in the past 6 months and 27% in the past week. Twenty six percent experienced one or more side effect of AEDs. A significant number of respondents admitted that epilepsy had a negative impact on several aspects of their daily life activities, education and social functioning. Of individuals eligible for work, 17% were unemployed or had their job terminated because of epilepsy. Relationships with spouses were affected in 20 % of cases. Fifteen percent felt stigmatized by their illness. None of the participants had received any formal health education or counseling about epilepsy. Conclusion: Epilepsy has a significant impact on several aspects of QOL, particularly physical injury and socioeconomic functioning affecting PWE living in Khartoum State. Poor seizure control, a risk factor for impaired QOL, was common. The overall perceptions of QOL and self satisfaction as stated by our PWE was more favorable when compared to those in developed countries and the Gulf. Nevertheless, this could be more reflective of social circumstances and better seizure control, health education and counseling for PWE and their families is still encouraged and recommended.