Brain Disorders (Sep 2022)
Findings from the implementation of a novel needs assessment survey in children and youth with epilepsy; The impact of social determinants of health on utilization of medical services
Abstract
Objective: This study aimed to characterize the relationship between social determinants of health (SDOH) and epilepsy-specific outcomes. Methods: This was an observational, cross-sectional, quality improvement study. We developed a novel screening survey (The Epilepsy Needs Assessment Survey), which was administered to patients with epilepsy at a large urban hospital. We assessed the prevalence of various SDOH and the association with independence in activities of daily living, verbal status, prevalence of intractable epilepsy, missed school/work days, missed neurology appointments and emergency department visits related to seizure. Results: Forty-nine percent of participants reported at least one insecurity. While disease burden did not appear to differ significantly between families with and without hardships, families who reported any hardship had almost twice the percentage of missed neurology appointments and were significantly more likely to have an ED visit related to seizure (RR = 5.44, CI 2.82–10.48). Significance: Several studies have suggested that social determinants of health (SDOH) impact various patient health outcomes such as developmental concerns, functional limitations and higher healthcare utilization. The majority of studies have been performed in general pediatric clinics and the impact of SDOH on patients with complex medical conditions in subspecialty clinics has not been well documented. This is one of the first studies to assess the effects of SDOH on patient-centered, epilepsy specific outcomes using a low cost, novel standardized screening tool.