Epilepsy in Papua New Guinea: a longitudinal cohort study

Area of Science:

• Pediatrics
• Neurology
• Global Health

Background:

• Epilepsy prevalence is high in low- and middle-income countries (LMICs).
• Limited research exists on the challenges faced by children with epilepsy in LMIC settings.
• Papua New Guinea represents a LMIC context with unique healthcare considerations.

Purpose of the Study:

• To document the situation for children with epilepsy in Port Moresby, Papua New Guinea.
• To assess seizure control and neurodevelopmental outcomes over two years.
• To explore the lived experiences, challenges, and perceptions of children with epilepsy and their parents.

Main Methods:

• A longitudinal cohort study was conducted over two years.
• Mixed methods approach incorporating quantitative seizure control and neurodevelopmental data.
• Qualitative data gathered through structured interviews with children and parents.

Main Results:

• Fifty-five percent of the 47 children studied had associated neurodevelopmental disabilities.
• Challenges included financial difficulties, fear of seizures, social isolation, stigma, and discrimination.
• Seizure control showed improvement for some, but inconsistent phenobarbitone supply was a barrier.

Conclusions:

• Comprehensive care requires understanding individual patient needs, family dynamics, and psychosocial factors.
• Children with epilepsy in this setting experience significant isolation and restricted opportunities.
• Addressing stigma and ensuring consistent medication supply are crucial for improving outcomes.