Abstracts

Rationale: The National Coordinating Center for Epilepsy (Center) at the American Academy of Pediatrics recently conducted a national needs assessment which aimed to understand the gaps and challenges in health care as experienced by primary care providers (PCPs), pediatric and adult neurologists, and other health professionals who care for children and youth with epilepsy (CYE). While the needs assessment collected both quantitative and qualitative data, this abstract presents the results of the qualitative data analysis.

Methods: In May and June 2021, Center staff conducted virtual focus groups and key informant interviews via Zoom with primary and specialty care providers, advanced practice professionals, and other health care professionals serving CYE (N=18). Focus group and interview audio recordings were sent to a transcription service. The transcripts were subsequently sent to an evaluation consultant for analysis. The data was analyzed using qualitative methods, including content and thematic analysis.

Results: Focus group and key informant interview scrips centered on three key domains: 1) access to care, 2) quality of care, and 3) systems/policies impacting care for CYE. Access to care barriers were identified as system-related (eg, number of available epilepsy monitoring units, Level 4 epilepsy centers, pediatric epileptologists); provider-related (eg, lack consistent treatment and referral protocols); and patient-related: (eg, language barriers, geographic barriers, medication adherence). Telehealth was consistently seen as a way to reduce/remove access-related barriers, but its limitations were also described. Regarding quality of care, respondents suggested increasing PCP awareness about the services offered by epilepsy centers and how to properly connect patients with those centers. Additionally, respondents suggested increased epilepsy-specific training for PCPs and having PCPs and specialists improve communication about the care of shared patients. For systems/policies impacting CYE care, main themes centered around issues with time, billing, and care coordination. The roll of advanced practice and allied health professionals within the care team was also discussed by multiple respondents.

Conclusions: Results of the needs assessment indicate that gaps and challenges in providing high quality care to children and youth with epilepsy as experienced by health care professionals are consistent with what has been found by prior research on the subject. Innovative and large-scale improvements are needed to close the systemic gaps in access to and quality of care for CYE.

Funding: Please list any funding that was received in support of this abstract.: This project was funded by the Health Resources and Services Administration/Maternal Child Health Bureau under the Innovations in Access to Care for Children and Youth with Epilepsy cooperative agreement, #U23MC26252.