‘Big issues’ in neurodevelopment for children and adults with congenital heart disease

Verrall, Charlotte E; Blue, Gillian M.; Loughran‐Fowlds, Alison; Kasparian, Nadine A.; Gécz, Jozef; Walker, Karen; Dunwoodie, Sally L.; Cordina, Rachael; Sholler, Gary F.; Badawi, Nadia; Winlaw, David S.

doi:10.1136/openhrt-2018-000998

Cited by 59 publications

(61 citation statements)

References 109 publications

(148 reference statements)

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“…Children with a Fontan circulation are at increased risk of neurodevelopmental impairment [29,139,140]. Although a lower mean intelligence quotient (IQ) compared with that of their healthy peers has been reported [141,142], most people with a Fontan circulation have intellectual function within the normal range [143].…”

Section: Neurodevelopment and Neurocognitive Outcomesmentioning

confidence: 99%

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival.

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Section: Neurodevelopment and Neurocognitive Outcomesmentioning

confidence: 99%

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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“…Typically, these neurodevelopmental deficits appear during childhood and persist until adulthood, ultimately affecting societal contribution and quality of life. This results in a life-long need for remedial services and is becoming a considerable burden in terms of cumulative cost for society (4,5).…”

Section: Introductionmentioning

confidence: 99%

Fetal brain issues in congenital heart disease

et al. 2021

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Following the improvements in the clinical management of patients with congenital heart disease (CHD) and their increased survival, neurodevelopmental outcome has become an emerging priority in pediatric cardiology. Large-scale efforts have been made to protect the brain during the postnatal, surgical, and postoperative period; however, the presence of brain immaturity and injury at birth suggests in utero and peripartum disturbances. Over the past decade, there has been considerable interest and investigations on fetal brain growth in the setting of CHD. Advancements in fetal brain imaging have identified abnormal brain development in fetuses with CHD from the macrostructural (brain volumes and cortical folding) down to the microstructural (biochemistry and water diffusivity) scale, with more severe forms of CHD showing worse disturbances and brain abnormalities starting as early as the first trimester. Anomalies in common genetic developmental pathways and diminished cerebral substrate delivery secondary to altered cardiovascular physiology are the forefront hypotheses, but other factors such as impaired placental function and maternal psychological stress have surfaced as important contributors to fetal brain immaturity in CHD.The characterization and timing of fetal brain disturbances and their associated mechanisms are important steps for determining preventative prenatal interventions, which may provide a stronger foundation for the developing brain during childhood.

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“…15 A substantial proportion (up to 50%) of infants with complex CHD exhibit neurodevelopmental impairments, including developmental delays, learning deficits, and difficulties with emotional and behavioral regulation. [16][17][18][19][20][21] A range of factors may contribute to neurodevelopmental vulnerability in this population, including disease complexity and comorbidity, prematurity, history of mechanical support, cardiopulmonary resuscitation or peri-operative seizures, stroke, and greater length of perioperative intensive care unit and total hospital stay. 18,22,23 In addition, our understanding of the genetic and epigenetic contributions to neurodevelopmental vulnerability in infants with CHD is rapidly evolving.…”

Section: Introductionmentioning

confidence: 99%

“…18,22,23 In addition, our understanding of the genetic and epigenetic contributions to neurodevelopmental vulnerability in infants with CHD is rapidly evolving. 17,24 Recognition of the role of ecological factors is also growing, particularly in terms of the potential lifelong health consequences of frequent and cumulative exposure to early childhood adversity and toxic stress. 25,26 For critically-ill infants within the neonatal (NICU), pediatric (PICU) or cardiac intensive care unit (CICU), stressors can originate from the physical environment (e.g., bright lights, loud sounds, noxious smells), 27,28 clinical environment (e.g., painful and invasive but life-sustaining procedures, neurotoxic medications), 29,30 and psychosocial environment (Figure 1).…”

Section: Introductionmentioning

confidence: 99%

Mental health care for parents of babies with congenital heart disease during intensive care unit admission: Systematic review and statement of best practice

Kasparian

Kan

Sood

et al. 2019

Early Human Development

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Introduction: Congenital heart disease (CHD) is one of the most common causes of infant admission to pediatric intensive care and is associated with profound psychological stress for mothers, fathers and their infants. Intensive care unit admission represents an opportunity to offer evidence-based strategies to prevent or minimize severe psychological distress and promote secure bonding and attachment, alongside high-quality infant medical care.Objectives: We aimed to identify, synthesize and critically appraise published evidence on the efficacy and cost-effectiveness of mental health interventions delivered in neonatal, pediatric or cardiac intensive care units for parents of infants with CHD. A secondary goal was to develop recommendations for advancing health policy, practice and research in the field. Methods:In accordance with a prospectively registered protocol (CRD42019114507), six electronic databases were systematically searched for studies reporting results of a controlled trial of a mental health intervention for parents of infants aged 0-12 months with a congenital anomaly requiring intensive care unit admission. To maximize generalizability of results, trials involving infants with any type of structural congenital anomaly requiring surgery were included. Outcomes included intervention type, process, efficacy, and cost-effectiveness.Results: Across all forms of congenital anomaly, only five trials met inclusion criteria (four in CHD, one in gastrointestinal malformation). All interventions engaged parents face-to-face, but each had a distinct therapeutic approach (parent-infant interaction and bonding, early pediatric palliative care, psychoeducation, parenting skills training, and family-centered nursing). Four of the five trials demonstrated efficacy in reducing maternal anxiety, although the quality of evidence was low. Positive results were also found for maternal coping, mother-infant attachment, parenting confidence and satisfaction with clinical care, as well as infant mental (but not psychomotor) development at 6 months. Mixed results were found for maternal depression and infant feeding. No evidence of efficacy was found for improving parent, infant or family quality of life, physical health or length of infant hospital stay, and there were no data on costeffectiveness. Conclusions:Stronger evidence for the efficacy of mental health interventions to buffer the effects of intensive care unit admission for parents of infants with CHD is urgently needed. Robust, high-quality

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‘Big issues’ in neurodevelopment for children and adults with congenital heart disease

Cited by 59 publications

References 109 publications

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Fetal brain issues in congenital heart disease

Mental health care for parents of babies with congenital heart disease during intensive care unit admission: Systematic review and statement of best practice

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