What is it about?

This observational study assessed racial disparities in adherence barriers, seizure outcomes, and electronically-monitored anti-seizure medication (ASM) adherence among Black and White youth with epilepsy. Data from adolescents (13-17 years old; n=43) and caregivers of youth (2-17 years old; n=226) across four pediatric epilepsy adherence studies were combined for analyses. Even after accounting for socioeconomic status (SES), Black families had lower ASM adherence and reported more ASM adherence barriers than White families. Further, Black families were more likely to report system- and community-level ASM adherence barriers (e.g., difficulty getting medications from pharmacy, running out of medications, and competing demands) than White families. These system- and community-level ASM adherence barriers were also the most important barriers for seizure control among Black families. Among White families, individual-level ASM adherence barriers (e.g., forgetting and swallowing difficulties) were the most important barriers for seizure control. Both system- (e.g., getting medications from the pharmacy) and individual-level (e.g., unpleasant taste and forgetting/refusal) were important barriers for ASM adherence among both Black and White families.

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Why is it important?

Currently, pediatric adherence research and interventions tend to focus on identifying and addressing individual-level adherence barriers and largely ignore system- and community-level adherence barriers, which may unintentionally exacerbate existing health disparities. Results of the current study highlight that system-level adherence barriers disproportionately negatively impact seizure outcomes among Black youth. Thus, pediatric adherence research, assessment, and intervention needs to shift to emphasize both individual-level and system-level barriers in order to: 1) focus on adherence barriers most important for health outcomes across racial-ethnic groups; and 2) reduce health disparities affecting minority populations.

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This page is a summary of: Racial Disparities in Medication Adherence Barriers: Pediatric Epilepsy as an Exemplar, Journal of Pediatric Psychology, January 2022, Oxford University Press (OUP),
DOI: 10.1093/jpepsy/jsac001.
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