Table 2.

Interventions: Critical Questions, Significant Gaps in Knowledge, and Investigations Needed

Critical Questions	Significant Gaps in Knowledge	Investigations Needed
CQ1. How do we adapt effective interventions that address known risk factors in CHD?	• Despite considerable research evaluating the effectiveness of a range of neurodevelopmental and psychosocial interventions in other medical populations, the safety, feasibility, acceptability, and effectiveness of these interventions is limited among individuals with CHD  • Very little is known about the effectiveness of neurocognitive interventions, particularly among school-age children, adolescents, and young adults with CHD	• Investigate the safety and feasibility of individualized developmental care interventions in the CICU  • Examine best practices for promoting handling and moving of infants while inpatient.  • Study short and longer range outcomes associated with individualized developmental care interventions in the CICU  • Conduct translational research studying empirically-supported psychosocial and neurocognitive interventions developed for other populations in individuals with CHD  • Investigate new modalities for delivering neurodevelopmental and psychosocial interventions within the CHD population
CQ2. What is the impact of neurodevelopmental and psychosocial interventions in individuals with CHD?	• Most prior neurodevelopmental and psychosocial intervention studies in CHD are limited to single-center, concurrent, observational studies  • Many CHD neurodevelopmental intervention studies exclude individuals with genetic conditions	• Operationalize clinically meaningful intervention outcomes for each developmental stage  • Conduct prospective randomized controlled trials with longer-term follow-up to investigate efficacy and effectiveness beyond the typical snapshot of a pre-post intervention  • Partner with key stakeholders to define “clinically meaningful” outcomes
CQ3. How are CND programs currently utilized, in what ways do coordinated CND programs impact outcomes, and what are the best program practices?	•Limited number of published studies examining the benefits of developmental follow-up programs among individuals with CHD	• Conduct feasibility, acceptability, and accessibility studies to examine processes (e.g., screening, monitoring procedures) and components (e.g., types of services) that result in the most beneficial CND programs  • Examine whether centers that have coordinated CND programs show improved neurodevelopmental and psychosocial outcomes for individuals with CHD  • Develop efficient ways of triaging patients seen in CND programs to different levels of intervention based on individual needs
CQ4. How do we foster the development of resilience in individuals with CHD?	•Experiences driving the development of resilience among individuals with CHD and interventions to bolster the development of resilience in the CHD population have not been adequately examined	•Adopt a conceptual framework for designing and conducting resilience-promoting intervention studies that appropriately captures the nature and complexity of resilience  •Capitalize on early identification to support caregiver/family resilience prior to delivery  •Recognize individual and family-based differences in perception regarding the experience of living with CHD  •Identify interventions for promoting resilience during childhood and adolescence  •Include resilience as a primary outcome in CHD surgical trials
CQ5. How do we develop systematic and effective approaches to optimize developmental transitions and transitions in care for individuals with CHD and their families?	•The full range of transitions inherent to the experience of living with CHD has neither been adequately characterized nor have interventions to support effective transitions been examined  •It remains unclear how best to promote functional independence, adaptive skills, and self-awareness among individuals with CHD	•Comprehensively characterize the full range of transitions inherent to living with CHD  •Utilize quality improvement science to improve strategies to assist families in navigating CHDspecific challenges and transitions

Note. CHD = congenital heart disease, CQ = critical question, CND = cardiac neurodevelopmental.