The quality of life among Sudanese children with epilepsy and their care givers.

In the past few years, there has been a progressive increase in appreciation of the importance of quality of life (QOL) especially among patients with epilepsy. This issue had not been addressed in Sudanese children with epilepsy. We here aim to assess the quality of life in Sudanese children with epilepsy and their family care giver. This study was conducted in 2011 at the Epilepsy and Neurodisablity Out-patient Clinic at Saad Abualila University Hospital, Sudan. The study included 100 Children with epilepsy, and their care givers, whose age was between 6-18 years and had seizure for more than one year. The questionnaire used contains 27 questions; it was divided into four sections: impact of epilepsy and treatment, impact on the child development, impact on parents and impact on the family. For each question there were two dimensions: the frequency of the problem and the concerns that it causes. The total score ranges from 0 to 54. A combined total scale scores were calculated. The commonest concern regarding epilepsy was that the child may injure oneself, followed by that the child may stop breathing or develop brain damage or even die. The commonest concern regarding treatment was that medication may cause reduced alertness. The relevant mean scores in frequency and concern were 5.77 and 5.83 out of 10 respectively. In the child development domain, the commonest concern was that the child may become more moody and the related mean scores in frequency and concern were 9.36 and 9.32 out of 18. The commonest concern to parent was decreased ability for self care with relevant mean scores in frequency and concern of 3.14 and 3.16 out of 10. The commonest concern to the family was that the child needs to be more closely watched than other children. The mean scores here in frequency and concern were 5.37 and 5.44 out of 14. The group with epilepsy and associated co morbidities, longer seizure and treatment duration had consistently higher mean scores which were proved to significantly lower their QOL. There is a significant decline in the quality of life among Sudanese children with epilepsy and their family care giver. Psychosocial consultation, family support programs and health education for parent, teachers and publics about different aspects of epilepsy need to be addressed through mass media.