Epilepsy in children in Papua New Guinea: a longitudinal cohort study

Background Epilepsy affects up to 1-4% of children living in low income and middle countries, however there are few studies of the problems faced by children with epilepsy in such settings. Aim To document the characteristics and situation for children with epilepsy in Port Moresby, an urban area in Papua New Guinea, a low-middle income country in the Western Pacific region. To describe the types of epilepsy, associated comorbidities, treatment access and barriers, the adequacy of seizure control, the quality of life and developmental opportunities, and the difficulties faced by children with epilepsy and their families. Methods A longitudinal cohort study, following children with epilepsy over 18-24 months. Mixed methods evaluations included assessments of seizure control, medications, neurodevelopment, and structured interviews with children and parents, and a parent-diary to record additional information. Results Forty-seven children with epilepsy were followed for a median of 18 months; 75% were being treated with phenobarbitone. Seizure control improved over time for some children, but inconsistent supply of phenobarbitone hindered better control. Twenty six (55%) children had some developmental delay. Children gave vivid descriptions of their experience of seizures. Most children and parents had a positive view of the future but faced many challenges including financial difficulties, fear of seizures especially at school, restriction of activity and stigma and discrimination. Conclusion Comprehensive care for children with epilepsy requires a good knowledge of the individual patient - including their seizure type and comorbidities, their family, and their strengths and vulnerabilities. It requires long term follow up, with a dedicated team of health professionals to provide support.