Background Epilepsy ranks among the commonest chronic neurological diseases, with a global estimate of 5 million people diagnosed annually. It is broadly defined as having two or more unprovoked seizures linked to a spectrum of behavioral, psychiatric, and cognitive disorders resulting from birth injuries, endemic conditions, or traumatic brain injuries. Worldwide, up to 50 million people are affected, of whom 10.5 million are children below 15 years of age. Despite its high burden, up to 70% of epileptic patients could live seizure-free with accurate and timely diagnosis and appropriate long-term treatment with relatively cheap and effective anti-epileptic drugs (AEDs). The main obstacle in achieving this goal is the medication non-compliance more frequently reported in middle-income (44.4%) and low-income countries (74.8%). Adherence relates to using the prescribed treatment appropriately with regards to time, quantity, period, and manner.
Objectives We aim to understand the behaviors underlying non-compliance to AEDs in children from marginalized communities to formulate specific interventions to improve the treatment gap.
Methods The target population was children diagnosed with epilepsy under 15 years from lower- and middle-income communities (LMIC), and non-adherence to AEDs was identified as the target behavior. A literature review with keywords ‘Pediatric Epilepsy,’ ‘LMIC,’ ‘Non-Compliance,’ ‘Medication Adherence,’ and ‘Behaviors’ was conducted via Google Scholar and PubMed. Based on the abstract review, 22 articles were shortlisted for full article review, out of which 7 articles were finalized for analysis. The primary factors identified were fear, stigma, concerns about the medication’s safety, and insufficient knowledge of the disease. These behaviors were analyzed in detail via the COM-B Model of Capability, Opportunity, and Motivation proposed by Miche et al. This analysis provides a framework to link targeted interventions to the specified behaviors and policy domains to the outlined interventions via the Behavior Change Wheel (BCW) Methodology.
Results A wide range of physical, psychological, and social factors underpinning the non-compliance to the AEDs were identified and mapped to the COM-B Model (table 1) of psychological or physical capabilities, social and physical opportunities, and automatic and reflective motivation. Forgetfulness was the primary issue at around 54.25%, followed by disapproved perceptions about epilepsy such as denial, self-pity, social exclusion, and fear of societal exclusion (20.55%); and mistrusting their physician leading to increased concerns about medication safety and side-effects (8.87%).
Conclusions This study’s main application lies in formulating interventions related to acknowledging misconceptions and stigmas related to Epilepsy and improving health-care systems by creating a team-based approach to patient care in meeting the required demands. These interventions may also be linked to devise applicable policies to impact reforming target behavior significantly.
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