Discussion

This assessment by the New England Congenital Cardiology Association Health Disparities Working Group describes the current landscape of neurodevelopmental care for children with CHD at nine cardiac centres across six New England states, including four surgical centres and five non-surgical academic centres. Our findings reveal variable services with some reliance on the surgical centres, yet many local resources are independent of the surgical centre.

While institutions may have differing approaches to cardiac neurodevelopmental care, a pronounced distinction can be observed in the practices of surgical centres, regardless of size, compared to non-surgical centres. Surgical centres, which are often referral centres for patients throughout the New England region, depend on internal neurodevelopmental programmes for CHD patients, but only 50% have cardiac-specific programmes, and the remaining utilise other internal neurodevelopmental or developmental paediatrics programmes for high-risk groups. Non-surgical centres, in contrast, tend to rely on the services of the institution where cardiac surgery was performed, despite available developmental services for children with CHD and distance for the patient to the original surgical centre, which could be in another state.

Many current recommendations describe best practices and essential components of cardiac neurodevelopmental follow-up programmes. ^{Reference Ilardi, Sanz and Cassidy24–Reference Miller, Lisanti and Witte27} Our survey data suggest many of the components of recommended follow-up may already be present at academic paediatric institutions (including developmental care, multidisciplinary team involvement, continued parental and family education and support) and are not unique to surgical centres alone. Given the low return rates to surgical centres, especially for those from farther distances, ^{Reference Ortinau, Wypij and Ilardi15,Reference Loccoh, Yu and Donohue20,Reference Khan, McGrath, Ramsey, Agarwal, Slatore and Broberg28} our data suggest there is greater opportunity for collaboration between regional academic centres to provide care that may be more accessible. Regionalisation has been a focus of paediatric cardiac surgical care ^{Reference Katz, Mohan and Bacon29,Reference Backer, Overman and Dearani30} but a similar model of comprehensive and essential centres could be considered in the cardiac neurodevelopmental care models where non-surgical academic centres serve as essential regional centres in collaboration with other programmes. Expansion of the telehealth-based neurodevelopmental services initiated at many cardiac centres during the COVID-19 pandemic ^{Reference Vaughan, Moore, Moreno, Dyer, Oluyomi and Lopez31} should also be considered to address health care disparities and reach more CHD patients. Telehealth may provide particular benefit to those who live at a significant distance from cardiac centres with limited access to transportation, but there are still technology- and language-based limitations. ^{Reference Kasparian, Sadhwani and Sananes32}

Children with complex CHD have a unique developmental trajectory and well-described common domains of concern. ^{Reference Morton, Ishibashi and Jonas5} As such, an argument could be made that neurodevelopmental programmes and individualised care plans specifically designed for patients with CHD may be ideal. ^{Reference Marino, Lipkin and Newburger12,Reference Ilardi, Sanz and Cassidy24,Reference Miller, Lisanti and Witte27} Given that only two cardiac centres in New England have cardiac-specific neurodevelopmental programmes, however, the reality is that subspecialised paediatric developmental care resources are limited. With attendance rates for large, well-resourced, surgical centre neurodevelopment follow-up programmes reported to be under 30%, ^{Reference Ortinau, Wypij and Ilardi15} the majority of individuals are evidently not returning to large specialised clinics for care. Recent data from the state of Maine exemplified this pattern, as many children with complex CHD engage services outside of the regional centre. ^{Reference Bohnhoff, Cutler and Price33} Therefore, collaboration and shared learning are essential across regional centres to leverage resources closer to home. For example, many local systems may be able to support triage and therapy, while collaborating with regional cardiac neurodevelopmental experts for neurocognitive testing.

A number of approaches can be taken by regional academic centres to increase patient retention in neurodevelopmental care. The presence of hospital-initiated scheduling is an important predictor of patient attendance at neurodevelopmental evaluation. ^{Reference Ortinau, Wypij and Ilardi15} Our data show that 40% of non-surgical centres depend on interest or concern raised from a patient’s family or primary care team for initial referral to neurodevelopmental evaluation. As such, increasing hospital-initiated scheduling is a potential area of improvement for academic centres. Implementation of automatic referral practices based on defined criteria has the potential to reach a higher percentage of patients with neurodevelopmental needs while reducing the burden on clinicians and families to initiate scheduling. Standardised surveillance programmes should additionally be considered to decrease variability in referral processes across cardiac neurodevelopmental programmes and address health care disparities. Standardised checklists for cardiologists during routine visits have been previously shown to increase referral completion with an increased benefit for patients identifying as Hispanic/Latino. ^{Reference Hennrick, Miller and Lai21}

Recent efforts have been made to better understand how cardiac care teams can support parent mental health and reduce strain on families of children with CHD. ^{Reference Lisanti34–Reference Utens, Callus, Levert, Groote and Casey36} The Cardiac Neurodevelopmental Outcome Collaborative identified parent mental health and family function as a critical area of advancement in neurodevelopmental care for the coming decade. ^{Reference Sood, Jacobs and Marino37} Our findings reveal that cardiac centres in New England have the infrastructure for psychological services and peer support for both patients with CHD and their parents. However, nearly all centres rely on demonstrated need or parental request to access mental and behavioural health services. Future studies should consider how supports are offered and utilised and how their utilisation impacts psychosocial well-being and quality of life for caregivers and children with CHD. It could be beneficial for centres to refer all parents to mental health screening at the time of CHD diagnosis to increase awareness of these services and minimise social barriers to accessing mental health resources for themselves and their children. ^{Reference Lisanti34}

Patient and family education also plays a key role in facilitating familial involvement and improving neurodevelopmental follow-up for children with CHD. Given that 60% of foetal cardiology teams and 100% of paediatric cardiology teams surveyed report only sometimes providing neurodevelopmental education to families of children with CHD at outpatient visits, improving the consistency of early neurodevelopmental education offers a common point of growth across all centres. Early initiation of neurodevelopmental discussions during routine cardiac care improves familial awareness and understanding of the neurodevelopmental vulnerabilities affecting children with CHD and may compel continued participation in care. ^{Reference Brosig, Butcher and Butler26}

The current study has several limitations. First, the survey tool used to measure cardiac and neurodevelopmental practices at New England cardiac centres is not validated. Survey questions were used as surrogates for neurodevelopmental care practice and resources of cardiac centres in New England; these were not objectively measured outcomes. Survey questions were designed to capture the extent of typical practice, and therefore, some questions relied on estimation or the best answer if multiple choices were applicable, potentially leading to generalisations of available resources and common practices. Additionally, only a small group of paediatric cardiology providers affiliated with New England Congenital Cardiology Association completed the survey to represent provider perspectives from the entire New England region. Patient perspectives were not measured, nor were providers asked to assess the quality of neurodevelopmental services, wait times for appointments, or confirm the appointment occurred. As such, information about the implementation and quality of available services cannot be evaluated. Finally, New England has a high concentration of paediatric academic centres and a relatively short driving distance between them despite the rurality of Northern New England. Other regions in the United States with fewer paediatric academic centres may have fewer neurodevelopmental resources available in such proximity than those described. As a consequence, the resources available to cardiac centres in New England may not be generalisable to all regions of the United States or world. Regardless, this study provides several new insights into cardiac neurodevelopmental resources that are available to patients with CHD beyond surgical centres and offers a foundation for other regions to consider exploring what aspects of assessment and intervention may be accessible closer to home. While the specific resources may not be similar, the concept of a local team having more knowledge of the local community and therapy supports, may be important to consider for any given region. For any given patient, the role of their surgical centre, paediatrician and his/her local health system, primary cardiologist and his/her local health system, as well as community and school-based resources as it pertains to supporting their development may be very different. Our data suggest that there is opportunity for collaboration, and all regions should consider the broad landscape of opportunity for children with CHD at risk for neurodevelopmental disability.