The myriad of care required across the lifespan for children born with CHD requires a coordinated team of parents/caregivers, clinicians, and educators. However, identification of these at-risk patients is the first step with surveillance and neurodevelopmental/neuropsychological evaluation facilitating access to appropriate supports and services. This study describes the successful implementation of a standardized surveillance program, which significantly improved clinical care for CHD patients past the early developmental phase, as evidenced by significant increases to referral volume and decreases to incomplete referrals. Data are consistent with recent evidence demonstrating that hospital-initiated (versus family-initiated) referral for neurodevelopmental evaluation is a significant predictor of attendance [15]. However, this study demonstrates that hospital-initiated referrals following surveillance without accompanying education and parent involvement can still lead to a high rate of no shows. This formal surveillance program significantly decreased the rate of incomplete referrals due to physician-related (versus patient-related) factors and addressed the most common reasons for incomplete referrals by supporting family psychoeducation by cardiologists [26]. Overall, the surveillance program was beneficial to patients/families as it increased access to the neuropsychology subspecialty within the larger medical system. Additionally, it opened the door for serial evaluations to track patients across development and update recommendations to support them with regularity.
Notably, results demonstrated a significantly higher number of completed referrals compared to expected values for patients identifying as Hispanic/Latino. Implementation of a standardized surveillance program with appropriately translated materials was especially critical for patients from historically marginalized groups who are at the greatest risk for disparities in access and quality of care, and relatedly, outcomes [3, 27]. The most vulnerable patients/families must overcome a plethora of barriers to accessing healthcare; for example, race correlates with other socioeconomic factors including education level, income, and employment, all of which are lower among Black Americans when compared to White Americans, and these factors in turn impact health insurance coverage, health literacy, and patient beliefs [9]. Other reasons for lower cardiac utilization among non-White patients have been suggested to include referral and treatment biases, lack of culturally appropriate communication, lack of trust for physicians, and differences in procedural risk aversion [8, 27]. This highlights the need to prioritize making prevention and intervention services more accessible for the highest risk CHD patients, with recognition for the systems of oppression that have historically limited marginalized groups’ access to care and may make certain populations less trusting of the healthcare system as a whole [27].
Implementation of a formal surveillance program also provided notable benefits to cardiologists. For example, common barriers to implementation of neurodevelopmental follow-up care have included lack of time to perform neurodevelopmental assessment, lack of knowledge about neurodevelopment and associated guidelines, lack of a collaborative interdisciplinary and multidisciplinary team, and lack of institutional support for the program [28]. The implementation of a standardized surveillance checklist allowed cardiologists to work with team members (e.g., nurses, medical assistants) to maximize their medical visit with patient families by determining whether time needed to be spent discussing a referral for neurodevelopmental evaluation and focusing discussion on relevant parental concerns. Integration of educational materials for cardiologists improved their awareness of referral guidelines for neurodevelopmental evaluation and provided scripts for parent education, facilitating education with families. Improved referral systems (e.g., automated scripts) and communication between neuropsychologists and cardiologists following the evaluation (e.g., report directly shared with referring cardiologist) also facilitated a multidisciplinary team approach to collaborative patient care. Timepoints for initial and suggested re-evaluation are recorded in a master tracking document to ensure appropriate follow-up and reduce burden on cardiologists and families related to referrals for re-evaluations. Finally, implementation of the surveillance program was formalized as a quality improvement project by the institution; the project included auditing of whether surveillance was properly conducted, thus supporting the cardiologists in self-monitoring their implementation of surveillance procedures and adequate education and referral when necessary.
Improving the quality of cardiac neurodevelopmental evaluations also supported buy-in from cardiologists to refer for evaluation. The CNP includes dedicated neuropsychologists that follow a standardized evaluation process consistent with AHA and CNOC guidelines. Each evaluation includes a thorough medical chart review and clinical interview with parents/caregivers. Each evaluation uses a standardized battery of performance-based tests by age group (with allowance for flexibility when clinically indicated) that screens across all neurocognitive domains while assessing those most vulnerable to impairment. Domains assessed across age groups include intellectual functioning, attention, executive functioning, learning and memory, language processing, visual-motor functioning, and academic achievement. In addition to performance-based measures, standardized parent/caregiver rating forms are utilized to assess emotional, behavioral, social, and adaptive functioning. Following completion of testing, feedback sessions always precede the provision of a written evaluation report; this ensures that parents have an opportunity to hear the results, ask questions, and discuss/clarify the treatment plan. Comprehensive written reports are also provided, with report standardization used to improve efficiency while maximizing comprehensiveness in providing written feedback. Significant adjustments are also consistently made to reduce commonly reported evaluation burdens for linguistically and culturally diverse populations, including minimizing number of appointments and therefore travel time/costs, limiting telehealth appointments to address potential technological/Internet difficulties, adjusting standardized battery to account for linguistic needs of patients, using bilingual neuropsychologists or clinically competent interpreters in providing services, and providing translated materials (e.g., parent forms, written reports) when appropriate.
The surveillance program also contributed to increased productivity for the hospital. In FY 2021, before implementation of the surveillance program, there were a total of 340 referrals placed to neuropsychology; of that, 45 referrals came from cardiology, indicating that 13.2% of the total referral volume intended to serve CHD patients. In FY 2022, after implementation of the surveillance program, there were a total of 445 referrals to neuropsychology; of that, 75 referrals came from cardiology, indicating that 16.9% of the total volume intended to serve CHD patients. Cardiology went from being the third highest referring department to the second highest referring department after Neurology between FYs. The success of this program has led to further interdepartmental initiatives to support the pipeline to cardiac neurodevelopmental services. For example, to further cultivate relationships with families before a patient’s initial referral to the CNP, neonates being discharged from the cardiovascular intensive care unit receive an informational packet and gift (“Cardiology for Babies” book [29] from the program, in addition to introduction to the CNP team, information regarding neurodevelopmental and neuropsychological evaluations, and projected evaluation schedule).