Behavioral health resources among US pediatric epilepsy centers

Current guidelines, quality indicators, and recommendations broadly recognize the importance of behavioral health care integrated into routine epilepsy visits; however, no specific guidance currently exists for how to implement this care. To address this gap, the Value-based special interest group (SIG) of the Pediatric Epilepsy Research Consortium (PERC) developed and disseminated a survey to inquire about availability and access to behavioral health care and roles of behavioral health care providers (e.g., neuropsychologists, psychologists, and social workers) within epilepsy centers across the US. This 52-item survey was emailed to directors of the National Association of Epilepsy Centers (NAEC) level 3 and 4 pediatric centers (n = 130). The response rate was 38 % (N = 50 centers). The 14 questions pertaining to behavioral health care and several additional items regarding epilepsy center size (i.e., number of neurologists) and comprehensive care resource availability are presented here. Survey results identified that most sites (80 %) have access to neuropsychologist(s), who uniformly perform presurgical evaluations. In contrast, only a quarter of centers have psychologists dedicated to epilepsy patients, with 40 % of them indicating a greater than 3-month wait to see a psychologist. Approximately half of centers have social workers dedicated to epilepsy patients. Common practice for all three of these behavioral health professionals is discussed. Findings underscore the need for greater access to psychologists and more defined roles for behavioral health providers within specific settings to increase the availability of and decrease wait times for behavioral health care.