Abstracts

Rationale: People with epilepsy face increasing barriers to receiving healthcare in the US, which are compounded by known racial and socioeconomic disparities. We used a mixed-methods approach to survey a wide range of participants on important and feasible ways to improve access to epilepsy care in New Jersey.

Methods: The group concept mapping methodology was chosen for its ability to provide equal weight to a diverse group of perspectives. It consists of three phases: Brainstorming, Sorting, and Rating. We recruited people with epilepsy, their advocates, clinicians, and professionals involved in epilepsy care in New Jersey online. Of note, group concept mapping mitigates attrition by not requiring that the same individuals participate in all three phases of the study.

First, participants performed Brainstorming by responding to a focus prompt: "We can improve patient access to quality epilepsy care in New Jersey by..." Participants then did Sorting, in which they sorted and labelled statements into piles of related ideas. They subsequently Rated each statement in terms of (1) importance and (2) feasibility on a 10-point Likert scale. We used a multidimensional scaling algorithm and hierarchical cluster analysis to generate into point and cluster maps. At the statement level, we created a Go-Zone map to understand which statements were both highly important and feasible.

Results: Forty-nine participants performed Brainstorming, including 19 people with epilepsy, 15 caregivers / loved ones, 13 clinicians, one non-clinician professionals and one other category. The initial 110 statements were synthesized and edited to a final set of 36 statements. To date, we have 25 participant responses for Sorting and Rating, including 15 people with epilepsy, three caregivers/loved ones, four clinicians, and three other.

The 36 statements were sorted into an eight cluster solution map (Figure 1). Participants rated mental health resources (mean rating 8.47), insurance coverage (8.28), and provider education (8.24) as the most important clusters. However, they rated patient and family support (7.95), community support (7.92), and internet and technology (7.35) clusters as the most feasible to implement.

After creating the Go-Zone (Figure 2), participants rated nine statements as highly feasible and important. These included discussion with epilepsy providers, electronic messaging to providers, educating primary care providers on epilepsy, follow-up after emergency department care for new-onset seizure, insurance coverage for telemedicine, and improving access to mental health care.

Conclusions: Participants preliminarily identified key themes that may enhance access to epilepsy care in New Jersey. Among these, mental healthcare and insurance emerged as critical interventions, albeit challenging to implement practically without government support. In future studies, we hope to examine the effectiveness of solutions prioritized by participants-those deemed both important and feasible-to improve the equitable delivery of epilepsy care.

Funding: This study was funded by the American Epilepsy Society and the New Jersey Health Foundation.