Abstract
Children with CHD are at risk for psychosocial and neurodevelopmental difficulties, as well as lapses in care during their transition from paediatric to adult CHD providers. The American Heart Association and American Academy of Pediatrics released guidelines for best practices in the neurodevelopmental and transitional care for children with CHD in 2012 and 2011, respectively. CHD providers from 48 (42.1% response rate) geographically diverse cardiac clinics completed a 31-item electronic survey designed to assess the cardiac teams' consistency with neurodevelopmental evaluation and management recommendations, consultation/liaison patterns for psychosocial services, and procedures regarding transitional services for emerging adults. Responses suggest most cardiac teams refer patients to psychosocial services as needed, and 39.6% of teams screen for psychosocial distress. CHD providers at 66.7% of cardiac clinics reported a formal neurodevelopmental programme/clinic. Nearly half of cardiac teams conduct routine neurodevelopmental evaluations, most frequently occurring at 9 months of age. Less than 10% of cardiac clinics have resources to meet the American Heart Association and American Academy of Pediatrics 2012 neurodevelopmental evaluation and management guidelines. Formal paediatric to adult CHD transition programmes were reported at 70.8% of cardiac clinics and were associated with younger ages of transition to adult CHD care. Care practices varied across the 48 represented cardiac clinics, indicating inconsistent practices for patients with CHD. Barriers and facilitators to the provision of care for children in these areas were reported and are presented. More support is needed for cardiac clinics to continue improvements in psychosocial, neurodevelopmental, and transitional care services.
Highlights
Advancements in medical care have increased the likelihood that children with CHD will reach adulthood.[1]
The current study aimed to examine the practices for children with CHD regarding neurodevelopmental, psychosocial, and transitional care as part of their outpatient care across paediatric cardiology clinics in North American hospitals
CHD providers (n = 558) at these clinics were identified via hospital websites and the Congenital Cardiology Today’s 2018 Hospital Directory of Congenital Cardiac Care Providers in North America Offering Open Heart Surgery for Children and subsequently e-mailed a recruitment letter in June 2019 that included a link to the online study
Summary
Advancements in medical care have increased the likelihood that children with CHD will reach adulthood.[1] research and clinical care has increased focus on the emotional, behavioural, and neurodevelopmental vulnerabilities for patients with CHD and their families.[2] the majority of families of children with CHD are resilient and will adjust to their child’s diagnosis well, approximately 40% of families are at an elevated risk for psychosocial distress.[3,4] Parents report increased risk of anxiety, depression, and attachment concerns when raising a child with CHD.[5,6,7,8,9] Children and teenagers with CHD are at an increased risk for behavioural problems, mood conditions (depression, anxiety), and impaired health-related quality of life compared to same-aged peers.[10,11,12,13,14,15,16,17,18] children with CHD have higher rates of neurodevelopmental concerns, with children with more complex and severe CHD vulnerable to varying degrees of cognitive impairment.[12,16,19,20].
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