Treatment Gap in Childhood Epilepsy (TGCE): Pakistan Regional Study in Under-Resourced Community

Background: The epidemiological data on childhood epilepsy, essential to plan services in resource constrained developing nations, is scarce. Identifying the determinants of treatment gaps in childhood epilepsy is essential to provide optimal care for childhood epilepsy. Study type and duration:This was a descriptive cross-sectional community based study conducted from April 14, 2014 to April 16, 2014, conducted at two privately owned hospitals in Bhakhar, Punjab, Pakistan. Objective: To evaluate the treatment gap and its determinants in childhood epilepsy in Bhakhar city. Methods: We conducted a random three-stage sampling of children being treated as epileptic or had epileptic seizures. Subjects were identified through two days of free paediatric neurology camps, one day at each hospital. A twenty-item screening questionnaire was used to identify the presence of epilepsy. Definitions provided by International League against Epilepsy (ILAE) were used to classify the screened positive subjects as epilepsy. The treatment gap and factors associated with it were assessed and calculated by two pediatric neurologists in consensus. Information obtained from subjects and their care givers included: demographic characteristics, current and past treatment options utilized, reasons for treatment options used and reasons for nonadherence to antiepilepsy drugs (AEDs). Results: 130 children with epilepsy were enrolled and epilepsy treatment gap of 90% was documented among these patients. Nonadherence was observed in 70(54%) patients, 50(38%) patients were adherent to the prescribed AEDs, whereas 10(8%) patients had never used any antiepileptic drug; on the other hand 61% of the total patients were being treated with polytherapy (?2AEDs). The most common causes of TGCE were cost, untrained health professionals, poor/no counseling to the parents, nonavailability of AEDs and younger age of the patients. No national or international organization was found attempting to decrease TGCE in Bhakhar city. Conclusion: Owing to the marked scarcity of comprehensive childhood epilepsy care centers in under-resourced communities of Pakistan, only a minority of patients are being treated optimally. Determining the appropriate interventions need to narrow the treatment gap and these rely critically upon understanding the magnitude of treatment gap and the driving forces behind it.