Ilardi, Dawn

Adults with congenital heart disease (CHD) constitute a growing population with challenges related to cardiovascular and neurological health. Many individuals born with CHD experience neurodevelopmental delays in childhood. Ongoing neurocognitive and psychological concerns impact education, employment, and quality of life. Despite this, interventions to address these issues are largely unexplored. Collaborations among multidisciplinary experts and patient partners culminated at a 2‐day Adult Congenital Heart Disease (ACHD)/Neuro Conference (April 2024) to review the current state of knowledge and guide future directions for research and clinical care. Three working groups separately focused on genetics and brain health, characterizing outcomes, and interventions among patients with ACHD. This article focuses on the work of the interventions group. A consensus statement was created to synthesize current knowledge, identify key gaps, and recommend next steps around 5 critical questions designed to guide research and clinical care for interventions with ACHD: (1) What interventions are effective for improving neurocognitive functioning? (2) What interventions are effective for improving psychological wellbeing? (3) What evidence do we have about safety and efficacy of psychotropic medications? (4) What interventions can improve health literacy? (5) What are modifiable facilitators and barriers to accessing high‐quality neurocognitive and psychological interventions? Limited research and fragmented health systems hinder interventions in ACHD. Efforts from pediatric congenital heart disease could inform the ACHD community. Although interventions are costly and resource intensive, neglecting neurocognitive and psychological needs could lead to lower quality of life and higher health care costs. By ultimately shifting to prevention and intervention, the ACHD community could facilitate positive outcomes.

Abstract Objective In the wake of the COVID-19 pandemic, psychologists were pushed to look beyond traditional in-person models of neurodevelopmental assessment to maintain continuity of care. A wealth of data demonstrates that telehealth is efficacious for pediatric behavioral intervention; however, best practices for incorporating telehealth into neurodevelopmental assessment are yet to be developed. In this topical review, we propose a conceptual model to demonstrate how telehealth can be incorporated into various components of neurodevelopmental assessment. Methods Harnessing existing literature and expertise from a multidisciplinary task force comprised of clinicians, researchers, and patient/parent representatives from the subspecialty of cardiac neurodevelopmental care, a conceptual framework for telehealth neurodevelopmental assessment was developed. Considerations for health equity and access to care are discussed, as well as general guidelines for clinical implementation and gaps in existing literature. Results There are opportunities to integrate telehealth within each stage of neurodevelopmental assessment, from intake to testing, through to follow-up care. Further research is needed to determine whether telehealth mitigates or exacerbates disparities in access to care for vulnerable populations as well as to provide evidence of validity for a wider range of neurodevelopmental measures to be administered via telehealth. Conclusions While many practices are returning to traditional, face-to-face neurodevelopmental assessment services, psychologists have a unique opportunity to harness the momentum for telehealth care initiated during the pandemic to optimize the use of clinical resources, broaden service delivery, and increase access to care for pediatric neurodevelopmental assessment.