Background. Given the heightened risk of neurodevelopmental and psychosocial challenges for children and adolescents with congenital (CHD) and acquired heart diseases, many pediatric heart centers have integrated psychosocial services (social work, psychology, child life, education specialists) across outpatient and inpatient settings to allow for appropriate evaluation, prevention, and management of concerns. The present study provides benchmarking data to inform the development and expansion of psychosocial and developmental programs within pediatric heart centers. 

Method. Data were collected via an electronic survey disseminated to pediatric psychologists through the American Psychological Association (APA) Society for Pediatric Psychology (SPP; Division 54) Cardiology Special Interest Group (SIG) listserv. Fourteen psychologists responded to the survey, each representing a unique North American pediatric heart center.  Using the guidelines outlined by Welke et al. (2009), 57.1% (n=8) of the participating heart centers were classified as “very large” volume centers, 21.4% (n=3) as “large” volume centers, and 21.4% (n=3) as “medium” volume centers. No responding centers were “small” volume centers. Respondents represented heart centers from diverse geographical regions in the United States (4 Midwest, 3 Northeast, 4 South, 2 West) and Canada (1).

Results. All participating pediatric heart centers (n=14, 100.0%) reported having outpatient cardiac neurodevelopmental (CND) programs, while 50.0% (n=7) reported having an inpatient neurodevelopmental program (e.g., developmental rounds). Most centers (n=12, 85.7%) reported having psychologists embedded within medical clinics, with Transplant Clinic as the most common embedded clinic (n=10, 71.4%), followed by Single Ventricle (n=5, 35.7%), and Electrophysiology (n=3, 21.4%). The full-time equivalent (FTE) for psychologists varied across centers. For CND/neuropsychological testing, the mean total psychologist FTE was 0.72 FTE for “very large” centers (SD=0.86, range=0-2.0), 0.50 FTE for “large” centers (SD=0.87, range=0-1.5), and 0.33 FTE for “medium” centers (SD=0.58, range = 0-1). For other clinical care, the mean total psychologist FTE was 0.93 FTE for “very large” centers (SD=0.43, range=0.1-1.33), 0.93 FTE for “large” centers (SD=0.31, range=0.60-1.20), and 0.97 FTE for “medium” centers (SD=0.15, range=0.8-1.10). Five heart centers reported having psychology postdoctoral fellows, though all were less than 1.0 dedicated clinical FTE to cardiology populations. All 14 programs (100%) reported having social workers in their heart center, ranging from 1-10 embedded social workers. Child life specialist support was also present in all 14 programs (100%) while 6 (42.9%) reported having education specialist services and 6 (42.9%) reported having peer mentoring programs. Of note, several respondents endorsed active cardiac psychology recruitment or program development efforts to expand psychosocial services for heart center patients. 

Conclusion. Results provide important benchmarking data for programs seeking to develop or expand psychosocial services for patients with pediatric heart disease and their families. Since data were collected via a cardiac psychology listserv, only centers with embedded psychologists are represented in this dataset. Future work should examine whether the existing psychosocial services in pediatric heart centers meet the clinical needs of the patient population.