Abstracts

Mental Health Resources Among US Pediatric Epilepsy Centers

Abstract number : 2.37
Submission category : 13. Health Services (Delivery of Care, Access to Care, Health Care Models)
Year : 2023
Submission ID : 611
Source : www.aesnet.org
Presentation date : 12/3/2023 12:00:00 AM
Published date :

Authors :
Presenting Author: Janelle Wagner, PhD – Medical University of South Carolina

Jason Coryell, MD – Oregon Health and Science University; Rachek Hirschberger, MD – Boston Children's Hospital; Sucheta Joshi, MD – University of Michigan; Anup Patel, MD – Nationwide Children's Hospital; Nilika Singhal, MD – University of California at San Francisco; Matthew Sweney, MD – University of Utah

Rationale:
Youth with epilepsy are at high risk for mental health and cognitive comorbidities [Russ et al. Pediatrics 2012;129:256–64; Reilly et al. Pediatrics 2014;133:e1586–93]. Routine assessment and treatment of these comorbidities and self-management behaviors are important components of comprehensive epilepsy; however, there are no guidelines for inclusion of this care in pediatric epilepsy centers [Labiner et al. Epilepsia 2010; 51:2322-33]. Previous studies of the screening practices of epilepsy mental health providers showed huge variation in the who, what, when, and how mental health care is provided [Wagner et al Epilepsy & Behavior 2019; 101, Part A: 106214]. To date, there has been no nationwide systematic evaluation of mental health resources (e.g., providers, referral networks, etc) and how they are utilized in pediatric epilepsy centers.

Methods:
The Pediatric Epilepsy Research Consortium (PERC) developed a 54-item survey to examining current practices and mental health care resources. A Qualtrics survey link was sent to directors of the National Association for Epilepsy Center (NAEC) Level 3 and 4 pediatric and pediatric/adult centers (N=135). The survey queries the presence, availability, and practice scope of psychologists, neuropsychologists, and social workers in pediatric centers.

Results:
A total of 31 programs responded, yielding a response rate of 23% (Final data pending as survey is not yet closed). Preliminary results revealed that the epilepsy sections of 25 centers had at least one half-time neuropsychologist (83.3%) who was near uniformly involved in pre-surgical and postsurgical evaluations. Neuropsychologists were also involved < 50% of the time in other activities within their scope (e.g., new diagnosis, fMRI paradigms, etc.; Table 1). Approximately one third of centers reported at least one psychologist working solely within their division or epilepsy section, and half of centers had dedicated social workers (Table 2). However, only four centers (13.3%) reported that psychologists are available at some or all epilepsy clinics, with asynchronous care being the most common practice. Further, mental health services are commonly delayed with eight (27%) centers indicate waiting one to three months, and 13 (43%) wait >3 months. Social workers are also commonly shared with another division (13; 43.3%); however, 42.8% (12/28) of respondents reported that social workers are available during epilepsy clinics. Additional results will be presented on mental health services by size of epilepsy center and specific services.

Conclusions:
Pediatric epilepsy care at Level 3/4 epilepsy centers in the US reliably involves neuropsychologists in surgical care, but a restricted range of services is common. Despite recent recommendations by the International League Against Epilepsy [Michaelis et al. Epilepsia 2019; 59: 1282-1302], the integration of mental health services into timely, routine care at pediatric epilepsy centers is the exception rather than the rule. Therefore, it will be critical to address these gaps in mental health care, even at the resource intense epilepsy centers, for our youth with epilepsy.

Funding: None

Health Services (Delivery of Care, Access to Care, Health Care Models)