Epilepsy in Papua New Guinea: a longitudinal cohort study

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. We aimed to document the 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. We conducted longitudinal cohort study using mixed methods, with serial data collected over 2 years which assessed seizure control, neurodevelopment, and structured interviews with children and parents. For quantitative data descriptive statistics are reported; for qualitative data common responses, themes, experiences and perceptions were grouped and reported in narrative. Forty-seven children with epilepsy were followed for a median of 18 months. Twenty six (55%) children had some associated neurodevelopmental disability. Children gave detailed and 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 having seizures especially at school, restriction of activity that isolated them from peers, and significant stigma and discrimination. Seizure control improved over time for some children, but inconsistent supply of phenobarbitone hindered better control. 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. Children with epilepsy face many problems that can lead to isolation, discrimination and restricted opportunities.