Table 2.

Neurodevelopmental and psychological outcomes: critical questions, significant gaps in knowledge, and investigations needed

Critical Questions	Significant Gaps in Knowledge	Investigations Needed
CQ1. How do we characterise and define neurodevelopmental and psychological outcomes in children with CHD?	• We need a better understanding of neurodevelopmental outcomes in CHD as networks of co-existent, interactive, and self-sustaining symptoms.	• Shift our conceptual frameworks of neurodevelopmental and psychological outcomes towards measurement of dimensional and dynamic variables
	• We need to better understand how these networks are unique to CHD and how they overlap with other pediatric medical or developmental conditions	• Utilise multivariate analyses to examine patterns and constellations of features in CHD • Identify key risk factors that predict specific presentations
	• Inadequate diversity in our research samples limits our understanding and generalisability of findings	• Develop comparative studies with other pediatric medical conditions
CQ2. What are the longitudinal trajectories of neurodevelopment for individuals with CHD across the lifespan?	• There are few longitudinal studies, especially those extending beyond school age/adolescence	• Conduct longitudinal research to evaluate the trajectories of neurodevelopmental and psychological outcomes
	• Few studies use sophisticated models, such as developmental cascades	• Utilise sophisticated statistical methods to evaluate the effects of early risk factors on later outcomes
	• Little is known regarding short- and long-term impact of medical comorbidities on neurodevelopmental characteristics that emerge with age	• Leverage multi-institutional, prospective data registries to facilitate and enhance neurodevelopmental and psychological research
CQ3. What outcomes are clinically meaningful to stakeholders and how do we measure clinically meaningful outcomes and differences?	• Neurodevelopmental outcome research in CHD has not typically engaged patient, family, or community stakeholders as partners	• Determine which outcomes are considered meaningful to stakeholders
	• We need more information regarding priorities for key stakeholders	• Identify variables that balance the needs of clinical practice and research and predict meaningful functional outcomes for families and other stakeholders
	• It is often unclear how statistically significant findings translate into clinically significant or meaningful findings	• Identify neurodevelopmental and psychological assessment tools that balance the needs of clinicians, researchers, and families
		• Examine meaningful outcomes with statistical analyses that consider individual factors, longitudinal change, and dynamic latent variables
CQ4. What factors predict resilience and are protective in individuals with CHD across the lifespan?	• Studies investigating protective factors associated with resilience or positive outcomes in CHD are lacking.	• Identify specific factors that predict resilience and positive outcomes for individuals with CHD and their families
	• How does broader literature regarding factors such as positive family functioning, parental mental health, and social support systems apply to patients and families with CHD?	• Examine the development of resilience and interactions among resilience and risk factors over time
CQ5. How do we engage diverse populations with CHD to better understand neurodevelopmental and psychological outcomes?	• There are few studies on cognitive testing among bilingual or culturally diverse children.	• Increase the number of racially, socially, and geographically diverse participants with CHD in neurodevelopmental and psychological outcomes research
	• There are no studies examining variations in performance due to cultural or linguistic factors specific to CHD.	• Improve our measurement of neurodevelopmental and psychological variables and other important contributing variables
	• Little information exists on demographic variability among participants/non-participants in studies, limiting their generalisability.	• Identify best practices for the evaluation of language dominance/proficiency for bilingual individuals.
		• Identify cross-cultural clinical training needs among providers within the CHD community.

CQ = critical question.