Prevalence and risk factors associated with non-attendance in neurodevelopmental follow-up clinic among infants with CHD

Abstract

The majority of infants with CHD at high risk for neurodevelopmental dysfunction evaluated in this study are not receiving important neurodevelopmental evaluation. Efforts to remove financial/insurance barriers, increase access to neurodevelopmental clinics, and better delineate other barriers to receipt of neurodevelopmental evaluation are needed.

Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease: A Scientific Statement From the American Heart Association

“…Despite this cumulative evidence, only a small fraction of children with congenital heart disease are offered or participate in formal psychological assessment or treatment. 44…”

“…Despite this cumulative evidence, only a small fraction of children with congenital heart disease are offered or participate in formal psychological assessment or treatment. 44 A systematic review of 44 qualitative studies that analyzed patterns in the narratives of 995 children and young people with congenital heart disease from 12 countries identified 6 key themes that have implications for psychological outcomes 45 : (1) disruptions to normal life (eg, fluctuations between sickness and health, destabilizing the family dynamic); (2) powerlessness during periods of deteriorating health (eg, vulnerability to complications, thoughts of mortality, exhaustion from medical testing); (3) enduring uncertainty and medical adversity (eg, trauma associated with invasive procedures, uncertainty and disappointment associated with treatment failure, a sense of displacement during transition to adult cardiac services, valuing empathy and continuity in clinical care); (4) warring with the body (eg, fatigue, physical limitations, distorted body image); (5) hampered goals (eg, feeling disabled, limited goal attainment and maintenance of milestones); and (6) establishing one's own pace (eg, fostering hope and a determination to thrive, embracing the positives, finding personal enrichment and social or spiritual support).…”

Lessons From the Queensland Paediatric Cardiac Service Neurodevelopmental Follow-up Programme

“…11,15 Further, challenges to programme development and attendance have been identified including high cost and resourcing, limited inclusion of school-age children, and travel implications for families to the surgical centre. 2,11,16,17 Long-term Developmental Follow-up for Children With Congenital Heart DiseasedAn Australian Context Building on existing work and in response to the AHA recommendations, in 2013, the Queensland Paediatric Cardiac Service (QPCS) established the CHD Long-term Improvement in Functional eHealth (LIFE) programme to support the longterm developmental follow-up of children at high risk for poorer outcomes. A pilot centralized clinic located at the surgical centre evolved to a statewide decentralized approach, supporting access to developmental services close to home.…”

Commentary on “Motor Developmental Delay After Cardiac Surgery in Children With a Critical Congenital Heart Defect: A Systematic Literature Review and Meta-analysis”

“…1 While detailed guidelines exist for risk stratification and the use of serial and standardized multidomain outcome measures, 2-4 embedding developmental care has not been widely realized for children who have CHD due to varying health system barriers. [5][6][7] Collaboratively designed service models between specialists, community clinicians, and families show promise for meaningful change. 1,7 Individualized motor interventions have the capacity to positively influence postoperative recovery and motor outcomes in early infancy for infants who have CHD 8 ; however, significant knowledge gaps remain in understanding neurodevelopmental interventions for this population.…”