RESUMO
Over the past decade, new research has advanced scientific knowledge of neurodevelopmental trajectories, factors that increase neurodevelopmental risk, and neuroprotective strategies for individuals with congenital heart disease. In addition, best practices for evaluation and management of developmental delays and disorders in this high-risk patient population have been formulated based on literature review and expert consensus. This American Heart Association scientific statement serves as an update to the 2012 statement on the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease. It includes revised risk categories for developmental delay or disorder and an updated list of factors that increase neurodevelopmental risk in individuals with congenital heart disease according to current evidence, including genetic predisposition, fetal and perinatal factors, surgical and perioperative factors, socioeconomic disadvantage, and parental psychological distress. It also includes an updated algorithm for referral, evaluation, and management of individuals at high risk. Risk stratification of individuals with congenital heart disease with the updated categories and risk factors will identify a large and growing population of survivors at high risk for developmental delay or disorder and associated impacts across the life span. Critical next steps must include efforts to prevent and mitigate developmental delays and disorders. The goal of this scientific statement is to inform health care professionals caring for patients with congenital heart disease and other key stakeholders about the current state of knowledge of neurodevelopmental outcomes for individuals with congenital heart disease and best practices for neuroprotection, risk stratification, evaluation, and management.
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American Heart Association , Cardiopatias Congênitas , Criança , Gravidez , Feminino , Estados Unidos , Humanos , Neuroproteção , Cardiopatias Congênitas/complicações , Fatores de Risco , AlgoritmosRESUMO
Children with congenital heart disease (CHD) can face neurodevelopmental, psychological, and behavioural difficulties beginning in infancy and continuing through adulthood. Despite overall improvements in medical care and a growing focus on neurodevelopmental screening and evaluation in recent years, neurodevelopmental disabilities, delays, and deficits remain a concern. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with the goal of improving neurodevelopmental outcomes for individuals with CHD and pediatric heart disease. This paper describes the establishment of a centralised clinical data registry to standardize data collection across member institutions of the Cardiac Neurodevelopmental Outcome Collaborative. The goal of this registry is to foster collaboration for large, multi-centre research and quality improvement initiatives that will benefit individuals and families with CHD and improve their quality of life. We describe the components of the registry, initial research projects proposed using data from the registry, and lessons learned in the development of the registry.
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Cardiopatias Congênitas , Qualidade de Vida , Criança , Humanos , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/diagnóstico , Sistema de RegistrosRESUMO
Sleep patterns of 419 toddlers with congenital heart disease were comparable with the normative population except for increased likelihood across the cohort of sleeping in parents' room and increased disrupted sleep in children aged 18-23 months. Disrupted sleep patterns were associated with lower maternal education and increased medical complexity.
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Cardiopatias Congênitas , Transtornos do Sono-Vigília , Humanos , Lactente , Pré-Escolar , Sono , Pais , Transtornos do Sono-Vigília/epidemiologia , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologiaRESUMO
OBJECTIVE: COVID-19 has markedly impacted the provision of neurodevelopmental care. In response, the Cardiac Neurodevelopmental Outcome Collaborative established a Task Force to assess the telehealth practices of cardiac neurodevelopmental programmes during COVID-19, including adaptation of services, test protocols and interventions, and perceived obstacles, disparities, successes, and training needs. STUDY DESIGN: A 47-item online survey was sent to 42 Cardiac Neurodevelopmental Outcome Collaborative member sites across North America within a 3-week timeframe (22 July to 11 August 2020) to collect cross-sectional data on practices. RESULTS: Of the 30 participating sites (71.4% response rate), all were providing at least some clinical services at the time of the survey and 24 sites (80%) reported using telehealth. All but one of these sites were offering new telehealth services in response to COVID-19, with the most striking change being the capacity to offer new intervention services for children and their caregivers. Only a third of sites were able to carry out standardised, performance-based, neurodevelopmental testing with children and adolescents using telehealth, and none had completed comparable testing with infants and toddlers. Barriers associated with language, child ability, and access to technology were identified as contributing to disparities in telehealth access. CONCLUSIONS: Telehealth has enabled continuation of at least some cardiac neurodevelopmental services during COVID-19, despite the challenges experienced by providers, children, families, and health systems. The Cardiac Neurodevelopmental Outcome Collaborative provides a unique platform for sharing challenges and successes across sites, as we continue to shape an evidence-based, efficient, and consistent approach to the care of individuals with CHD.
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COVID-19 , Telemedicina , Adolescente , Lactente , Criança , Humanos , COVID-19/epidemiologia , Estudos Transversais , Pandemias , CoraçãoRESUMO
AIM: To report neurological examination findings at 5 to 12 months of age in infants with congenital heart disease (CHD) and to identify predictors of abnormal neurological examination. METHOD: This retrospective observational study included infants who required cardiac surgery at less than 3 months of age and underwent a standard neurological examination from a neurologist in the cardiac neurodevelopmental outpatient clinic between age 5 months and 12 months. Predictors for abnormal neurological examination (concerns on structured developmental history, demographic factors, medical history, and newborn neurodevelopmental assessment) were considered for multivariate regression. RESULTS: The sample included 127 infants (mean age 7mo 2wks), who underwent first cardiac surgery at 7 days (4-49 interquartile range [IQR]) of age and were seen for a neurological examination in the cardiac neurodevelopmental clinic. Neurological abnormalities were common; 88% of infants had an abnormal neurological examination in at least one domain assessed. The most common abnormalities were abnormal axial (48%) and extremity (44%) tone, mostly hypotonia. Abnormal neurological examination was associated with concerns on the concurrent structured developmental history, genetic condition, extracardiac anomaly, longer length of stay, more than one cardiac surgery, ongoing early intervention services, and abnormalities on newborn neurodevelopmental assessment. INTERPRETATION: Neurological examination abnormalities are common in infants with CHD after infant heart surgery, supporting the need for early and ongoing therapeutic developmental services and adherence to American Heart Association recommendations for developmental follow-up for children with CHD. What this paper adds Neurological examination abnormalities are common in infants who undergo open-heart surgery. Medical complications in infancy increase risk for neurological abnormalities. Family-reported concerns on structured developmental history may predict abnormal neurological examination at 5 to 12 months of age. Abnormal newborn neurodevelopmental assessment may predict abnormal neurological examination at 5 to 12 months of age.
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Procedimentos Cirúrgicos Cardíacos , Cardiopatias Congênitas , Malformações do Sistema Nervoso , Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Deficiências do Desenvolvimento/complicações , Deficiências do Desenvolvimento/etiologia , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Recém-Nascido , Malformações do Sistema Nervoso/complicações , Exame Neurológico , Estudos RetrospectivosRESUMO
OBJECTIVE: In the wake of the COVID-19 pandemic, psychologists were pushed to look beyond traditional in-person models of neurodevelopmental assessment to maintain continuity of care. A wealth of data demonstrates that telehealth is efficacious for pediatric behavioral intervention; however, best practices for incorporating telehealth into neurodevelopmental assessment are yet to be developed. In this topical review, we propose a conceptual model to demonstrate how telehealth can be incorporated into various components of neurodevelopmental assessment. METHODS: Harnessing existing literature and expertise from a multidisciplinary task force comprised of clinicians, researchers, and patient/parent representatives from the subspecialty of cardiac neurodevelopmental care, a conceptual framework for telehealth neurodevelopmental assessment was developed. Considerations for health equity and access to care are discussed, as well as general guidelines for clinical implementation and gaps in existing literature. RESULTS: There are opportunities to integrate telehealth within each stage of neurodevelopmental assessment, from intake to testing, through to follow-up care. Further research is needed to determine whether telehealth mitigates or exacerbates disparities in access to care for vulnerable populations as well as to provide evidence of validity for a wider range of neurodevelopmental measures to be administered via telehealth. CONCLUSIONS: While many practices are returning to traditional, face-to-face neurodevelopmental assessment services, psychologists have a unique opportunity to harness the momentum for telehealth care initiated during the pandemic to optimize the use of clinical resources, broaden service delivery, and increase access to care for pediatric neurodevelopmental assessment.
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COVID-19 , Telemedicina , Criança , Humanos , Pandemias , SARS-CoV-2RESUMO
OBJECTIVE: This study examined longitudinal associations between performance on the Rey-Osterrieth Complex Figure-Developmental Scoring System (ROCF-DSS) at 8 years of age and academic outcomes at 16 years of age in 133 children with dextro-transposition of the great arteries (d-TGA). METHOD: The ROCF-DSS was administered at the age of 8 and the Wechsler Individual Achievement Test, First and Second Edition (WIAT/WIAT-II) at the ages of 8 and 16, respectively. ROCF-DSS protocols were classified by Organization (Organized/Disorganized) and Style (Part-oriented/Holistic). Two-way univariate (ROCF-DSS Organization × Style) ANCOVAs were computed with 16-year academic outcomes as the dependent variables and socioeconomic status (SES) as the covariate. RESULTS: The Organization × Style interaction was not statistically significant. However, ROCF-DSS Organization at 8 years was significantly associated with Reading, Math, Associative, and Assembled academic skills at 16 years, with better organization predicting better academic performance. CONCLUSIONS: Performance on the ROCF-DSS, a complex visual-spatial problem-solving task, in children with d-TGA can forecast academic performance in both reading and mathematics nearly a decade later. These findings may have implications for identifying risk in children with other medical and neurodevelopmental disorders affecting brain development.
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Sucesso Acadêmico , Transposição dos Grandes Vasos , Artérias , Criança , Humanos , Matemática , Testes NeuropsicológicosRESUMO
In 2018, the Neurodevelopmental and Psychosocial Interventions Working Group of the Cardiac Neurodevelopmental Outcome Collaborative convened through support from an R13 grant from the National Heart, Lung, and Blood Institute to survey the state of neurodevelopmental and psychosocial intervention research in CHD and to propose a slate of critical questions and investigations required to improve outcomes for this growing population of survivors and their families. Prior research, although limited, suggests that individualised developmental care interventions delivered early in life are beneficial for improving a range of outcomes including feeding, motor and cognitive development, and physiological regulation. Interventions to address self-regulatory, cognitive, and social-emotional challenges have shown promise in other medical populations, yet their applicability and effectiveness for use in individuals with CHD have not been examined. To move this field of research forward, we must strive to better understand the impact of neurodevelopmental and psychosocial intervention within the CHD population including adapting existing interventions for individuals with CHD. We must examine the ways in which dedicated cardiac neurodevelopmental follow-up programmes bolster resilience and support children and families through the myriad transitions inherent to the experience of living with CHD. And, we must ensure that interventions are person-/family-centred, inclusive of individuals from diverse cultural backgrounds as well as those with genetic/medical comorbidities, and proactive in their efforts to include individuals who are at highest risk but who may be traditionally less likely to participate in intervention trials.
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Cardiopatias Congênitas , Intervenção Psicossocial , Criança , Cognição , Emoções , Cardiopatias Congênitas/terapia , Humanos , Inquéritos e QuestionáriosRESUMO
Most children born with even the most critical forms of CHD are now surviving well into adulthood. However, with increased survival has come increased recognition of the diverse neurobehavioural and psychosocial challenges these children experience. Among these challenges are deficits in executive function skills, including inhibitory control, working memory, and cognitive flexibility. Over the past several years, whereas inhibitory control and working memory deficits have garnered particular attention among clinicians and interventionists, relatively less attention has been paid to cognitive flexibility. This is unfortunate given both the high prevalence of cognitive flexibility deficits observed in children and adolescents with critical CHD, and also the far-reaching relevance of cognitive flexibility in helping individuals achieve optimal quality of life across the lifespan. This paper reviews the construct of cognitive flexibility, including its definition, development, measurement, and neuroanatomical basis, provides a summary of how cognitive flexibility is affected by CHD, and offers evidence-based recommendations to systematically support the development of cognitive flexibility within the context of CHD.
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Função Executiva , Qualidade de Vida , Adolescente , Atenção , Criança , Cognição , Humanos , Memória de Curto PrazoRESUMO
In 2012, the American Heart Association and the American Academy of Paediatrics released a scientific statement with guidelines for the evaluation and management of the neurodevelopmental needs of children with CHD. Decades of outcome research now highlight a range of cognitive, learning, motor, and psychosocial vulnerabilities affecting individuals with CHD across the lifespan. The number of institutions with Cardiac Neurodevelopmental Follow-Up Programmes and services for CHD is growing worldwide. This manuscript provides an expanded set of neurodevelopmental evaluation strategies and considerations for professionals working with school-age children with CHD. Recommendations begin with the referral process and access to the evaluation, the importance of considering medical risk factors (e.g., genetic disorders, neuroimaging), and the initial clinical interview with the family. The neurodevelopmental evaluation should take into account both family and patient factors, including the child/family's primary language, country of origin, and other cultural factors, as well as critical stages in development that place the child at higher risk. Domains of assessment are reviewed with emphasis on target areas in need of evaluation based on current outcome research with CHD. Finally, current recommendations are made for assessment batteries using a brief core battery and an extended comprehensive clinical battery. Consistent use of a recommended assessment battery will increase opportunities for research collaborations, and ultimately help improve the quality of care for families and children with CHD.
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Cardiopatias Congênitas , Criança , Família , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/diagnóstico , Humanos , Encaminhamento e Consulta , Fatores de Risco , Instituições AcadêmicasRESUMO
Compared to the general population, individuals with complex congenital heart disease are at increased risk for deficits in cognitive, neurodevelopmental, psychosocial, and physical functioning, resulting in a diminished health-related quality of life. These deficits have been well described over the past 25 years, but significant gaps remain in our understanding of the best practices to improve neurodevelopmental and psychosocial outcomes and health-related quality of life for individuals with paediatric and congenital heart disease. Innovative clinical, quality improvement, and research opportunities with collaboration across multiple disciplines and institutions were needed to address these gaps. The Cardiac Neurodevelopmental Outcome Collaborative was founded in 2016 with a described mission to determine and implement best practices of neurodevelopmental and psychosocial services for individuals and their families with paediatric and congenital heart disease through clinical, quality improvement, and research initiatives. The vision is to be a multi-centre, multi-national, multi-disciplinary group of healthcare professionals committed to working together and partnering with families to optimise neurodevelopmental outcomes for individuals with paediatric and congenital heart disease through clinical, quality, and research initiatives, intending to maximise quality of life for every individual across the lifespan. This manuscript describes the development and organisation of the Cardiac Neurodevelopmental Outcome Collaborative.
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Cardiopatias Congênitas , Melhoria de Qualidade , Criança , Humanos , Qualidade de VidaRESUMO
OBJECTIVES: To prospectively assess rates and detailed predictors of morbidity and mortality among HIV-exposed uninfected children and HIV-unexposed children in Botswana in a more recent era. STUDY DESIGN: We enrolled HIV-infected and HIV-uninfected mothers and their children in the prospective observational Tshipidi study at 2 sites (1 city and 1 village) in Botswana from May 2010-July 2012. Live-born children and their mothers were followed for 24 months postpartum. Detailed sociodemographic data, health, and psychosocial characteristics were collected at baseline and prospectively, and health outcomes ascertained. Mothers chose infant feeding method with counselling. RESULTS: A total of 893 live-born HIV-uninfected children (436 HIV-exposed uninfected, 457 HIV-unexposed) were followed. HIV-infected mothers had a median CD4 count of 410 cells/mm3, 32% took 3-drug antiretroviral treatment during pregnancy, 67% took only zidovudine, and 1% took <2 weeks of any antiretrovirals antepartum. Twenty four-month vital status was available for 888 (99.4%) children. HIV-exposed uninfected children had a significantly higher risk of death compared with children of HIV-uninfected mothers (5.0% vs 1.8%) (adjusted hazard ratio 3.27, 95% CI 1.44-7.40). High collinearity between maternal HIV status and child feeding method precluded analysis of these factors as independent predictors of mortality. Preterm birth, low birth weight, and congenital anomaly were also associated with mortality (in separate analyses), but maternal socioeconomic factors, depression, substance use, and social support were not significant predictors. CONCLUSIONS: The strongest predictors of 24-month mortality among children in Botswana were HIV exposure and formula feeding, although the relative contribution of these factors to child health could not be separated.
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Infecções por HIV/epidemiologia , Fórmulas Infantis , Mortalidade Infantil , Complicações Infecciosas na Gravidez/epidemiologia , Efeitos Tardios da Exposição Pré-Natal , Adulto , Antirretrovirais/uso terapêutico , Botsuana/epidemiologia , Contagem de Linfócito CD4 , Anormalidades Congênitas/mortalidade , Feminino , Infecções por HIV/tratamento farmacológico , Humanos , Lactente , Recém-Nascido de Baixo Peso , Recém-Nascido , Gravidez , Nascimento Prematuro , Estudos ProspectivosRESUMO
OBJECTIVES: To assess psychiatric disorders and function in adolescents with repaired tetralogy of Fallot (TOF) without and with a genetic diagnosis and to evaluate associations of functioning with medical factors, IQ, and demographics. STUDY DESIGN: Adolescents with TOF (n = 91) and 87 healthy referents completed a clinician-rated structured psychiatric interview, parent-/self-report measures of psychopathology, and brain magnetic resonance imaging. Twenty-three of the adolescents with TOF had a known genetic diagnosis. RESULTS: The prevalence of anxiety disorders did not differ significantly between adolescents with TOF without genetic diagnosis (n = 68) and referents. Adolescents with TOF and a genetic diagnosis showed an increased lifetime prevalence of anxiety disorder (43%) and lower global psychosocial functioning (median, 70; IQR, 63-75) compared with adolescents with TOF without genetic diagnosis (15% and 83; IQR, 79-87, respectively; P = .04 and <.001, respectively) and referents (6% and 85; IQR, 76-90, respectively; P = .001 and <.001, respectively). Adolescents with TOF without and with a genetic diagnosis had a higher lifetime prevalence of attention deficit-hyperactivity disorder (ADHD) than referents (19% and 39%, respectively, vs 5%; P = .04 and .002, respectively) and worse outcomes on parent-/self-report ratings of anxiety and disruptive behavior compared with referents. Risk factors for anxiety, ADHD, and lower psychosocial functioning for adolescents with TOF without a genetic diagnosis included older age, male sex, and low IQ. Medical variables were not predictive of psychiatric outcomes. CONCLUSION: Adolescents with TOF, particularly those with a genetic diagnosis, show increased rates of psychiatric disorder and dysfunction. Continued mental health screening and surveillance into young adulthood is warranted for adolescents with TOF.
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Transtornos Mentais/epidemiologia , Tetralogia de Fallot/psicologia , Adolescente , Estudos Transversais , Feminino , Humanos , Testes de Inteligência , Masculino , Pais , Prevalência , Psicometria , Fatores de Risco , AutorrelatoRESUMO
OBJECTIVES: Although evidence exists of broadly defined memory impairment among adolescents with critical congenital heart disease (CHD), nuanced investigations of declarative memory in this at-risk population have not been conducted. This study had two primary aims: (1) to conduct a fine-grained analysis of a range of relevant learning and memory processes in adolescents with critical biventricular CHD, and (2) to identify risk, odds, and predictors of memory impairment. METHODS: Data were combined from two single-center studies of neurodevelopmental outcomes in critical CHD. Two-hundred seven adolescents (M age =15.61±1.0 years) with critical CHD (139 with dextro-transposition of the great arteries and 68 with tetralogy of Fallot without an identified genetic condition), as well as 61 healthy referents (M age =15.27±1.1 years) completed a neuropsychological evaluation which included the Children's Memory Scale. RESULTS: Whereas visual-spatial memory deficits were found in both CHD subgroups, verbal memory abilities were relatively preserved. Adolescents with CHD demonstrated stronger memory for Stories than Word Pairs, t (203)=2.63, p=.009, and for Dot Locations than Faces, t(204)=-2.57, p=.01. CHD subgroup, socioeconomic status, sex, and seizure history were among the most frequent significant predictors of memory impairment. Seizure history, in particular, was associated with a 2 to 3 times greater odds of impaired performance on learning and memory tasks. CONCLUSIONS: Adolescents with critical biventricular CHD are at risk for deficits in aspects of declarative memory. Independent risk factors for worse outcome include history of seizures. (JINS, 2017, 23, 627-639).
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Dextrocardia/complicações , Transtornos da Memória/etiologia , Tetralogia de Fallot/complicações , Adolescente , Feminino , Humanos , MasculinoRESUMO
Children and adolescents with critical cyanotic congenital heart disease (CHD) are at risk for deficits in aspects of executive function (EF). The primary aim of this investigation was to compare EF outcomes in three groups of children/adolescents with severe CHD and controls (ages 10-19 years). Participants included 463 children/adolescents with CHD [dextro-transposition of the great arteries (TGA), n=139; tetralogy of Fallot (TOF), n=68; and, single-ventricle anatomy requiring Fontan procedure (SVF), n=145] and 111 controls, who underwent laboratory and informant-based evaluation of EF skills. Rates of EF impairment on D-KEFS measures were nearly twice as high for CHD groups (75-81%) than controls (43%). Distinct EF profiles were documented between CHD groups on D-KEFS tasks. Deficits in flexibility/problem-solving and verbally mediated EF skills were documented in all three CHD groups; visuo-spatially mediated EF abilities were impaired in TOF and SVF groups, but preserved in TGA. Parent, teacher, and self-report ratings on the BRIEF highlighted unique patterns of metacognitive and self-regulatory concerns across informants. CHD poses a serious threat to EF development. Greater severity of CHD is associated with worse EF outcomes. With increased understanding of the cognitive and self-regulatory vulnerabilities experienced by children and adolescents with CHD, it may be possible to identify risks early and provide individualized supports to promote optimal neurodevelopment.
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Transtornos Cognitivos/etiologia , Função Executiva/fisiologia , Cardiopatias Congênitas/complicações , Adolescente , Análise de Variância , Criança , Transtornos Cognitivos/diagnóstico , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Estimulação Luminosa , Percepção Espacial , Inquéritos e Questionários , Adulto JovemRESUMO
The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.
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Transplante de Coração , Transplante de Órgãos , Criança , Humanos , Neuropsicologia , Qualidade de Vida/psicologia , Transplante de Órgãos/efeitos adversos , Transplante de Órgãos/psicologia , Ajustamento SocialRESUMO
Critical congenital heart disease (CHD) presents a lasting threat to quality of life through its adverse impact on neurodevelopmental and psychosocial outcomes. As recognition of this threat has increased, so too has an appreciation for the role of pediatric neuropsychologists in supporting families affected by CHD. But there is more to offer these families than traditional neuropsychological services, which tend to focus on secondary/tertiary forms of prevention. Now that many children with CHD are diagnosed prenatally, it may be possible to begin mitigating CHD-related risks and promoting positive outcomes earlier than ever before. Through primary prevention-oriented fetal neuropsychological consultation, as well as close collaboration with allied specialists, pediatric neuropsychology has an opportunity to re-envision its typical borders and more familiar practice models; to forge early and enduring partnerships with families; and to help promote the best possible neurodevelopmental trajectories, beginning before children are even born. In this conceptual review, we survey and integrate evidence from developmental science, developmental origins of health and disease, maternal-fetal medicine, and cardiac neurodevelopmental literatures, along with current practice norms, arriving ultimately at two central conclusions: 1) there is an important role to fill on multidisciplinary teams for the pediatric neuropsychologist in fetal cardiac care and 2) role expansion (e.g., through valuing broader-based training, flexing more generalist skills) can likely improve neuropsychological outcomes earlier than has been standard for pediatric neuropsychologists. Such a reimagining of our practice may be considered primary prevention neuropsychology. Implications for care in various settings and pragmatic barriers to implementation are discussed.
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Cardiopatias Congênitas , Neuropsicologia , Humanos , Criança , Feminino , Gravidez , Qualidade de Vida , Diagnóstico Pré-Natal , Cardiopatias Congênitas/diagnóstico , Prevenção PrimáriaRESUMO
Autism spectrum disorders are more prevalent in children with congenital heart disease (CHD) than in the general population. Children with CHD without diagnosed autism are also at increased risk for neurodevelopmental and psychiatric impairments. We characterized social and behavioral outcomes in children with CHD and examined neurodevelopmental and psychiatric comorbidities. Children without diagnosed autism who underwent infant open-heart surgery were eligible. Parent-reports assessed social communication, unusual behaviors, self-regulation, anxiety, and executive function (EF). Neuropsychological tests assessing theory of mind (ToM), working memory, and verbal comprehension were administered. Outcomes were compared to normative data. Linear regressions were estimated with parent-reported scores and ToM abilities as outcomes. Predictors were anxiety symptoms, parent-reported EF, and working memory scores. Covariates were age, parental education, ADHD diagnosis, and verbal comprehension. Clinically relevant comorbidities were identified (N children scoring ≥1SD below the norm). Fifty-six children (10.8 ± 1.8 years) participated virtually. Compared to norms, children with CHD had impaired ToM, more unusual behaviors (p = .002), and less self-regulation (p = .018), but better social communication (p = .014). "Autism-like" traits were positively associated with anxiety symptoms (ß(95% CI) = 0.28(0.08-0.49), p = .008) and worse working memory (ß(95% CI) = -0.36(-0.59-0.13), p = .003). Twenty-one out of 22 children who displayed clinically relevant social and behavioral scores also showed anxiety symptoms (n = 4), impaired EF (n = 7), or both (n = 10). Children with CHD without diagnosed autism have elevated unusual behaviors, lower self-regulation, and impaired ToM. There is a high risk of co-existing anxiety and impaired EF which may increase disease burden. Targeted therapeutic interventions are needed to reduce long-term psychosocial risks in these children.AbbreviationAttention deficit/hyperactivity disorder (ADHD), Autism Spectrum Rating Scale (ASRS), Behavior Rating Inventory of Executive Functions for school-aged children, 2nd Edition (BRIEF-2), cardiopulmonary bypass (CPB), congenital heart disease (CHD), Empathy/Systematizing Quotient Child Version (ESQ-C), Multidimensional Anxiety Scale for Children, 2nd Edition (MASC-2), Social Responsiveness Scale (School-age form), 2nd Edition (SRS-2), theory of mind (ToM), Theory of Mind Task Battery (ToM-TB), Wechsler Intelligence Scale for Children, 5th edition (WISC-V).