Authors :
Presenting Author: Rachel Hirschberger, MD, MPH – Boston Children's Health Physicians, Hartsdale, NY; Boston Children's Hospital, Boston, MA
Nilika Singhal, MD – Division of Epilepsy, Department of Neurology, University of California San Francisco; Matthew Sweney, MD – Brain and Spine Center, Primary Children’s Hospital; Division of Pediatric Neurology, University of Utah; Anup Patel, MD – Division of Neurology, Nationwide Children’s Hospital; The Center for Clinical Excellence, Nationwide Children's Hospital; Janelle Wagner, PhD, FAES – Medical University of South Carolina; Sucheta Joshi, MD, MS, FAES – University of Michigan, Ann Arbor; Jason Coryell, MD, MS – Department of Pediatrics, Oregon Health & Sciences University
Rationale: In the National Association of Epilepsy Centers (NAEC) guidelines for level 3 and 4 epilepsy centers, the committee emphasized the importance of a “collaborative, interdisciplinary team,” but largely left specifics up to the individual centers (Labiner et al. Epilepsia 2010; 51(11):2322-33). To our knowledge, no guidelines exist that define the ideal state for resourcing comprehensive epilepsy care, and no comprehensive assessment of how centers use resources (e.g., personnel) has been reported. Therefore, we surveyed centers to describe the current state and scope of personnel resources across US pediatric epilepsy centers.
Methods: The Pediatric Epilepsy Research Consortium (PERC) sent a 54-item survey to directors of NAEC Level 3 and 4 pediatric and pediatric/adult centers (N=130); current data reflect responses received by 5/31/23. The survey queries the number of professionals (providers and auxiliary staff), volume of work, distribution of tasks throughout division, and programmatic offerings. Medians are reported to minimize effects of asymmetric distributions across larger centers and because maximum values were occasionally collected as a range (e.g., 16+).
Results: Preliminary data is available from 33 centers (response rate=25%). The size of neurology divisions was evenly distributed with 42% of respondents from small (one to seven neurologists), 30% from medium eight to fifteen neurologists), and 27% from large divisions (sixteen plus neurologists). On average, there is a 1:3 ratio of advanced practice providers (APP) to neurologists, and the ratio is smaller for those working in epilepsy (Table 1). Similarly, there is a 1:3 ratio for nurses working in neurology and 1:4 in epilepsy.
Nurses frequently engage in administrative tasks (e.g. medication refills and other administrative tasks). In contrast, nurses spend < 10% of their time in clinic at >⅔ of centers, and the majority of patient management is done remotely (Table 2). Educational roles are primarily fulfilled by physicians/providers at a majority of centers (85% for new epilepsy diagnosis, 54% for seizure safety/rescue). Only 10% of centers indicated that patient education was a dispersed role throughout team members.
Conclusions: This is the first study to describe the distribution of healthcare providers and staff members and scope of practice within the field of pediatric epilepsy. Initial findings demonstrate a number of NAEC level 3 and 4 centers with limited support, such that administrative tasks are displaced to nurses and providers. Results highlight inefficiencies with each professional not operating at the top of scope of practice. Increasing resources has the potential to broaden comprehensive care for a greater number of children with epilepsy, and could substantially decrease the financial and emotional burden to families.
Funding: None