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1.
J Pediatr ; 263: 113687, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37611735

RESUMO

OBJECTIVE: To assess the utility of an inpatient standardized developmental screener for early identification of developmental risk in infants with a congenital heart defect (CHD). STUDY DESIGN: This was a retrospective, observational study with convenience sample of postoperative infants with CHD (aged 3-12 months) who underwent neurodevelopmental screening with the Bayley Scales of Infant and Toddler Development Screening Test, Third Edition (Bayley-III Screener) just before discharge. Follow-up testing included outpatient Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III) (12-42 mo). RESULTS: The Bayley-III Screener was administered to 325 infants at a median of 5 months, 8 days (IQR 3 months, 28 days, to 7 months, 17 days). Infants scored below age expectations on the Gross Motor (79%), Fine Motor (63%), Receptive Communication (50%), Expressive Communication (38%), and Cognitive (38%) domains. In each domain, children with CHD had greater rates of scores below expectations than the normative sample (each P <.001). The odds of scoring in a greater risk category were increased for infants with genetic syndromes and longer length of hospital stay across all domains. The outpatient Bayley-III (n = 74, 23% follow-up) was completed at a median of 19 months, 9 days (IQR: 17 months, 3 days, to 23 months, 37 days). Individuals falling in greater-risk categories on their initial Bayley-III Screener were significantly more likely to have worse performance on their follow-up outpatient Bayley-III (each domain P < .01). CONCLUSIONS: Inpatient standardized neurodevelopmental screening provides important clinical utility in identifying infants at risk for developmental concern, allows for provision of recommendations for developmental services, and potentially overcomes barriers often noted in returning for outpatient post-discharge assessments.


Assuntos
Deficiências do Desenvolvimento , Cardiopatias Congênitas , Humanos , Lactente , Assistência ao Convalescente , Desenvolvimento Infantil , Deficiências do Desenvolvimento/diagnóstico , Cardiopatias Congênitas/diagnóstico , Pacientes Internados , Alta do Paciente
2.
Pediatr Cardiol ; 2023 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-37543999

RESUMO

Children with congenital heart disease are at increased risk of neurodevelopmental delay throughout their lifespan. This risk is exacerbated following congenital heart surgery (CHS) in infancy. However, there are few modifiable risk factors for postoperative neurodevelopmental delay. In this study, we assessed the Residual Lesion Score (RLS), a quality assessment metric that evaluates residual lesion severity following CHS, as a predictor of neurodevelopmental delay. This was a single-center, retrospective review of patients who underwent CHS from 01/2011 to 03/2021 and post-discharge neurodevelopmental evaluation from 12 to 42 months of age using the Bayley Scales of Infant Development, 3rd Edition (BSID-III). RLS was assigned per published criteria: RLS 1, no residua; RLS 2, minor residua; and RLS 3, major residua or pre-discharge reintervention. Associations between RLS and BSID-III scores, as well as trends in neurodevelopmental outcomes over time, were evaluated. Of 517 patients with median age at neurodevelopmental testing of 20.0 (IQR 18.0-22.7) months, 304 (58.8%), 146 (28.2%), and 67 (13.0%) were RLS 1, 2, and 3, respectively. RLS 3 patients had significantly lower scaled scores in the cognitive, receptive, and expressive communication, and fine and gross motor domains, compared with RLS 1 patients. Multivariable models accounted for 21.5%-31.5% of the variation in the scaled scores, with RLS explaining 1.4-7.3% of the variation. In a subgroup analysis, RLS 3 patients demonstrated relatively fewer gains in cognitive, expressive communication, and gross motor scores over time (all p < 0.05). In conclusion, RLS 3 patients are at increased risk for neurodevelopmental delay, warranting closer follow-up and greater developmental support for cognitive, language, and motor skills soon after surgery.

3.
Cardiol Young ; 33(10): 1800-1812, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37727892

RESUMO

BACKGROUND: Neurodevelopmental challenges are the most prevalent comorbidity associated with a diagnosis of critical CHD, and there is a high incidence of gross and fine motor delays noted in early infancy. The frequency of motor delays in hospitalised infants with critical CHD requires close monitoring from developmental therapies (physical therapists, occupational therapists, and speech-language pathologists) to optimise motor development. Currently, minimal literature defines developmental therapists' role in caring for infants with critical CHD in intensive or acute care hospital units. PURPOSE: This article describes typical infant motor skill development, how the hospital environment and events surrounding early cardiac surgical interventions impact those skills, and how developmental therapists support motor skill acquisition in infants with critical CHD. Recommendations for healthcare professionals and those who provide medical or developmental support in promotion of optimal motor skill development in hospitalised infants with critical CHD are discussed. CONCLUSIONS: Infants with critical CHD requiring neonatal surgical intervention experience interrupted motor skill interactions and developmental trajectories. As part of the interdisciplinary team working in intensive and acute care settings, developmental therapists assess, guide motor intervention, promote optimal motor skill acquisition, and support the infant's overall development.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Transtornos das Habilidades Motoras , Recém-Nascido , Lactente , Humanos , Desenvolvimento Infantil , Destreza Motora
4.
Cardiol Young ; 33(12): 2521-2538, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36994672

RESUMO

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.


Assuntos
Procedimentos Clínicos , Cardiopatias Congênitas , Recém-Nascido , Lactente , Criança , Humanos , Opinião Pública , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/terapia , Cardiopatias Congênitas/diagnóstico
5.
Dev Med Child Neurol ; 64(6): 762-770, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-34921736

RESUMO

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.


Assuntos
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 Retrospectivos
6.
Pediatr Crit Care Med ; 23(3): e180-e185, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-34982760

RESUMO

OBJECTIVES: Describe variability in developmental care practices, as documented in the electronic health record, for infants undergoing congenital heart surgery. DESIGN: Multicenter, retrospective, cohort study. SETTING: Six pediatric cardiac centers. PATIENTS: One hundred eighty-two infants undergoing one of three index operations: Norwood palliation, aortic arch reconstruction with ventricular septal defect closure, or arterial switch. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Core domains of developmental care encompassing pain assessment, feeding, infant holding, caregiver involvement, therapy, and psychosocial services were reviewed. Practices varied across individuals, institutions, and the hospital stay. At five of six sites, greater than 90% of individuals had physical or occupational therapy services as part of their care, but the day of first evaluation ranged from day of admission to postoperative day 28. Similar patterns were seen in feeding team and social work involvement. Consistent documentation of developmental care was dependent on the domain and site. Of the total days reviewed (n = 1,192), pain scores were documented in 95%. In those same days, documentation of whether or not a patient was out of the crib to be held varied by site from 11% to 93%. Type of oral feeding, breast versus bottle, was documented on the day prior to discharge 48% of the time. CONCLUSIONS: There are significant, quantifiable variations in documented developmental care practices at both the individual and site level. More reliable documentation of developmental care practices is required to associate these variables with later outcomes and investigate disparities in individualized developmental care practices.


Assuntos
Cardiopatias Congênitas , Criança , Estudos de Coortes , Documentação , Cardiopatias Congênitas/cirurgia , Humanos , Lactente , Unidades de Terapia Intensiva , Estudos Retrospectivos
7.
Cardiol Young ; : 1-10, 2022 Dec 23.
Artigo em Inglês | MEDLINE | ID: mdl-36562257

RESUMO

Early surgical intervention in infants with complex CHD results in significant disruptions to their respiratory, gastrointestinal, and nervous systems, which are all instrumental to the development of safe and efficient oral feeding skills. Standardised assessments or treatment protocols are not currently available for this unique population, requiring the clinician to rely on knowledge based on neonatal literature. Clinicians need to be skilled at evaluating and analysing these systems to develop an appropriate treatment plan to improve oral feeding skill and safety, while considering post-operative recovery in the infant with complex CHD. Supporting the family to re-establish their parental role during the hospitalisation and upon discharge is critical to reducing parental stress and oral feeding success.

8.
Cardiol Young ; 31(6): 888-899, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34082844

RESUMO

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.


Assuntos
Cardiopatias Congênitas , Intervenção Psicossocial , Criança , Cognição , Emoções , Cardiopatias Congênitas/terapia , Humanos , Inquéritos e Questionários
9.
Cardiol Young ; 31(4): 589-596, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33303052

RESUMO

Congenital heart disease (CHD) is the most common birth defect for infants born in the United States, with approximately 36,000 affected infants born annually. While mortality rates for children with CHD have significantly declined, there is a growing population of individuals with CHD living into adulthood prompting the need to optimise long-term development and quality of life. For infants with CHD, pre- and post-surgery, there is an increased risk of developmental challenges and feeding difficulties. Feeding challenges carry profound implications for the quality of life for individuals with CHD and their families as they impact short- and long-term neurodevelopment related to growth and nutrition, sensory regulation, and social-emotional bonding with parents and other caregivers. Oral feeding challenges in children with CHD are often the result of medical complications, delayed transition to oral feeding, reduced stamina, oral feeding refusal, developmental delay, and consequences of the overwhelming intensive care unit (ICU) environment. This article aims to characterise the disruptions in feeding development for infants with CHD and describe neurodevelopmental factors that may contribute to short- and long-term oral feeding difficulties.


Assuntos
Cardiopatias Congênitas , Qualidade de Vida , Adulto , Cuidadores , Criança , Emoções , Cardiopatias Congênitas/epidemiologia , Humanos , Lactente , Pais
10.
J Pediatr ; 220: 93-100, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32147219

RESUMO

OBJECTIVE: Assess differences in approaches to and provision of developmental care for infants undergoing surgery for congenital heart disease. STUDY DESIGN: A collaborative learning approach was used to stratify, assess, and compare individualized developmental care practices among multidisciplinary teams at 6 pediatric heart centers. Round robin site visits were completed with structured site visit goals and postvisit reporting. Practices of the hosting site were assessed by the visiting team and reviewed along with center self-assessments across specific domains including pain management, environment, cue-based care, and family based care coordination. RESULTS: Developmental care for infants in the cardiac intensive care unit (CICU) varies at both a center and individual level. Differences in care are primarily driven by variations in infrastructure and resources, composition of multidisciplinary teams, education of team members, and use of developmental care champions. Management of pain follows a protocol in most cardiac intensive care units, but the environment varies across centers, and the provision of cue-based infant care and family-based care coordination varies widely both within and across centers. The project led to proposed changes in clinical care and center infrastructure at each participating site. CONCLUSIONS: A collaborative learning design fostered rapid dissemination, comparison, and sharing of strategies to approach a complex multidisciplinary care paradigm. Our assessment of experiences revealed marked variability across and within centers. The collaborative findings were a first step toward strategies to quantify and measure developmental care practices in the cardiac intensive care unit to assess the association of complex inpatient practices with long-term neurodevelopmental outcomes.


Assuntos
Comportamento Cooperativo , Cuidados Críticos/organização & administração , Unidades de Terapia Intensiva Neonatal/organização & administração , Aprendizagem , Modelos Educacionais , Cardiopatias Congênitas/cirurgia , Humanos , Recém-Nascido , Equipe de Assistência ao Paciente , Estados Unidos
11.
Cardiol Young ; 30(11): 1609-1622, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33143781

RESUMO

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities. The guidelines provided are derived from the substantial body of research generated over the past 30 years describing the characteristic developmental profiles and the long-term trajectories of children surviving with complex congenital heart conditions. The content and the timing of the guidelines are consistent with the 2012 American Heart Association and the American Academy of Pediatrics scientific statement documenting the need for ongoing developmental monitoring and assessment from infancy through adolescence. The specific guidelines offered in this article were developed by a multidisciplinary clinical research team affiliated with the Cardiac Neurodevelopmental Outcome Collaborative, a not-for-profit organisation established to determine and implement best neurodevelopmental practices for children with congenital heart disease. The guidelines are designed for use in clinical and research applications and offer an abbreviated core protocol and an extended version that expands the scope of the evaluation. The guidelines emphasise the value of early risk identification, use of evidence-based assessment instruments, consideration of family and cultural preferences, and the importance of providing multidimensional community-based services to remediate risk.


Assuntos
Cardiopatias Congênitas , Adolescente , Criança , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/epidemiologia , Humanos , Lactente , Estudos Longitudinais , Medição de Risco
13.
Cardiol Young ; 27(9): 1797-1806, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28780917

RESUMO

Mortality rates among children with CHD have significantly declined, although the incidence of neurological abnormalities and neurodevelopmental impairment has increased. Research has focussed on outcomes, with limited attention on prevention and intervention. Although some developmental differences and challenges seen in children with CHD are explained by the cumulative effect of medical complications associated with CHD, many sequelae are not easily explained by medical complications alone. Although cardiac intensive care is lifesaving, it creates high levels of environmental and tactile stimulation, which potentially contribute to adverse neurodevelopmental outcomes. The therapeutic method of individualised developmental care, such as the Newborn Individualized Developmental Care and Assessment Program, provides early support and preventive intervention based on each child's behavioural signals of stress, comfort, and strength. Implementing developmental care practices in a cardiac ICU requires a thoughtful and well-planned approach to ensure successful adoption of practice changes. This paper reviews how developmental care was introduced in a paediatric inpatient cardiac service through multidisciplinary collaborative staff education, clinician support, child neurodevelopment assessment, parent support, and research initiatives. Given the known risk for children with CHD, cardiac medical professionals must shift their focus to not only assuring the child's survival but also optimising development through individualised developmental care in the cardiac ICU.


Assuntos
Desenvolvimento Infantil/fisiologia , Cardiopatias Congênitas/psicologia , Cardiopatias Congênitas/terapia , Cuidado do Lactente/métodos , Cardiologia/educação , Pré-Escolar , Comportamento Cooperativo , Feminino , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva , Unidades de Terapia Intensiva Neonatal , Comunicação Interdisciplinar , Relações Interprofissionais , Masculino , Pais , Centros de Atenção Terciária
14.
J Pediatr Health Care ; 38(4): 604-614, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38647508

RESUMO

INTRODUCTION: Promoting safe sleep to decrease sudden unexpected infant death is challenging in the hospital setting. LOCAL PROBLEM: Concern for adherence to safe sleep practice across inpatient units at a large pediatric hospital. METHODS: Used quality improvement methodologies to promote safe sleep across all units. INTERVENTIONS: Development of a multidisciplinary expert group, hospital-wide guidelines, targeted interventions, and bedside audits to track progress. RESULTS: Adherence to safe sleep practices improved from 9% to 53%. Objects in the crib were a major barrier to maintaining a safe sleep environment. Safe sleep practices were less likely to be observed in infants with increased medical complexity (p = .027). CONCLUSIONS: Quality improvement methodology improved adherence to infant safe sleep guidelines across multiple units. Medically complex infants continue to be a challenge to safe sleep. Therefore, ongoing education for staff and further research into best practices for the most complex infant populations are necessary.


Assuntos
Fidelidade a Diretrizes , Hospitais Pediátricos , Melhoria de Qualidade , Morte Súbita do Lactente , Humanos , Morte Súbita do Lactente/prevenção & controle , Lactente , Recém-Nascido , Cuidado do Lactente/métodos , Cuidado do Lactente/normas , Sono/fisiologia , Feminino , Masculino , Guias de Prática Clínica como Assunto , Segurança do Paciente/normas
15.
Front Pediatr ; 12: 1384615, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38655280

RESUMO

Introduction: Infants with congenital heart disease (CHD) are at high risk for developmental differences which can be explained by the cumulative effect of medical complications along with sequelae related to the hospital and environmental challenges. The intervention of individualized developmental care (IDC) minimizes the mismatch between the fragile newborn brain's expectations and the experiences of stress and pain inherent in the intensive care unit (ICU) environment. Methods: A multidisciplinary group of experts was assembled to implement quality improvement (QI) to increase the amount of IDC provided, using the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), to newborn infants in the cardiac ICU. A Key Driver Diagram was created, PDSA cycles were implemented, baseline and ongoing measurements of IDC were collected, and interventions were provided. Results: We collected 357 NIDCAP audits of bedside IDC. Improvement over time was noted in the amount of IDC including use of appropriate lighting, sound management, and developmentally supportive infant bedding and clothing, as well as in promoting self-regulation, therapeutic positioning, and caregiving facilitation. The area of family participation and holding of infants in the CICU was the hardest to support change over time, especially with the most ill infants. Infants with increased medical complexity were less likely to receive IDC. Discussion: This multidisciplinary, evidence-based QI intervention demonstrated that the implementation of IDC in the NIDCAP model improved over time using bedside auditing of IDC.

16.
BMC Pediatr ; 13: 25, 2013 Feb 19.
Artigo em Inglês | MEDLINE | ID: mdl-23421857

RESUMO

BACKGROUND: The experience in the newborn intensive care nursery results in premature infants' neurobehavioral and neurophysiological dysfunction and poorer brain structure. Preterms with severe intrauterine growth restriction are doubly jeopardized given their compromised brains. The Newborn Individualized Developmental Care and Assessment Program improved outcome at early school-age for preterms with appropriate intrauterine growth. It also showed effectiveness to nine months for preterms with intrauterine growth restriction. The current study tested effectiveness into school-age for preterms with intrauterine growth restriction regarding executive function (EF), electrophysiology (EEG) and neurostructure (MRI). METHODS: Twenty-three 9-year-old former growth-restricted preterms, randomized at birth to standard care (14 controls) or to the Newborn Individualized Developmental Care and Assessment Program (9 experimentals) were assessed with standardized measures of cognition, achievement, executive function, electroencephalography, and magnetic resonance imaging. The participating children were comparable to those lost to follow-up, and the controls to the experimentals, in terms of newborn background health and demographics. All outcome measures were corrected for mother's intelligence. Analysis techniques included two-group analysis of variance and stepwise discriminate analysis for the outcome measures, Wilks' lambda and jackknifed classification to ascertain two-group classification success per and across domains; canonical correlation analysis to explore relationships among neuropsychological, electrophysiological and neurostructural domains at school-age, and from the newborn period to school-age. RESULTS: Controls and experimentals were comparable in age at testing, anthropometric and health parameters, and in cognitive and achievement scores. Experimentals scored better in executive function, spectral coherence, and cerebellar volumes. Furthermore, executive function, spectral coherence and brain structural measures discriminated controls from experimentals. Executive function correlated with coherence and brain structure measures, and with newborn-period neurobehavioral assessment. CONCLUSION: The intervention in the intensive care nursery improved executive function as well as spectral coherence between occipital and frontal as well as parietal regions. The experimentals' cerebella were significantly larger than the controls'. These results, while preliminary, point to the possibility of long-term brain improvement even of intrauterine growth compromised preterms if individualized intervention begins with admission to the NICU and extends throughout transition home. Larger sample replications are required in order to confirm these results. CLINICAL TRIAL REGISTRATION: The study is registered as a clinical trial. The trial registration number is NCT00914108.


Assuntos
Encéfalo/fisiologia , Desenvolvimento Infantil/fisiologia , Função Executiva , Retardo do Crescimento Fetal/terapia , Recém-Nascido Prematuro , Terapia Intensiva Neonatal/métodos , Logro , Análise de Variância , Encéfalo/crescimento & desenvolvimento , Criança , Comportamento Infantil , Cognição , Análise Discriminante , Eletroencefalografia , Feminino , Seguimentos , Humanos , Comportamento do Lactente , Recém-Nascido , Imageamento por Ressonância Magnética , Masculino , Testes Psicológicos , Resultado do Tratamento
17.
J Perinatol ; 43(7): 958-962, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37179381

RESUMO

Congenital heart disease (CHD) and prematurity are leading causes of infant mortality in the United States. Infants with CHD born prematurely are often described as facing "double jeopardy" with vulnerability from their underlying heart disease and from organ immaturity. They endure additional complications of developing in the extrauterine environment while healing from interventions for heart disease. While morbidity and mortality for neonates with CHD have declined over the past decade, preterm neonates with CHD remain at higher risk for adverse outcomes. Less is known about their neurodevelopmental and functional outcomes. In this perspective paper, we review the prevalence of preterm birth among infants with CHD, highlight the medical complexity of these infants, and emphasize the importance of exploring outcomes beyond survival. We focus on current knowledge regarding overlaps in the mechanisms of neurodevelopmental impairment associated with CHD and prematurity and discuss future directions for improving neurodevelopmental outcomes.


Assuntos
Cardiopatias Congênitas , Nascimento Prematuro , Lactente , Feminino , Recém-Nascido , Humanos , Estados Unidos/epidemiologia , Recém-Nascido Prematuro , Hospitalização , Morbidade , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologia
18.
J Am Heart Assoc ; 12(3): e028489, 2023 02 07.
Artigo em Inglês | MEDLINE | ID: mdl-36648070

RESUMO

Developmental disorders, disabilities, and delays are a common outcome for individuals with complex congenital heart disease, yet targeting early factors influencing these conditions after birth and during the neonatal hospitalization for cardiac surgery remains a critical need. The purpose of this science advisory is to (1) describe the burden of developmental disorders, disabilities, and delays for infants with complex congenital heart disease, (2) define the potential health and neurodevelopmental benefits of developmental care for infants with complex congenital heart disease, and (3) identify critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease. This call to action targets research scientists, clinicians, policymakers, government agencies, advocacy groups, and health care organization leadership to support funding and hospital-based infrastructure for developmental care in the complex congenital heart disease population. Prioritization of research on and implementation of developmental care interventions in this population should be a major focus in the next decade.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Cardiopatias Congênitas , Recém-Nascido , Humanos , Lactente , Cardiopatias Congênitas/cirurgia , American Heart Association , Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Hospitais
19.
J Patient Exp ; 9: 23743735221092488, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35493441

RESUMO

Input from diverse stakeholders is critical to the process of designing healthcare interventions. This study applied a novel mixed-methods, stakeholder-engaged approach to co-design a psychosocial intervention for mothers expecting a baby with congenital heart disease (CHD) and their partners to promote family wellbeing. The research team included parents and clinicians from 8 health systems. Participants were 41 diverse parents of children with prenatally diagnosed CHD across the 8 health systems. Qualitative data were collected through online crowdsourcing and quantitative data were collected through electronic surveys to inform intervention co-design. Phases of intervention co-design were: (I) Engage stakeholders in selection of intervention goals/outcomes; (II) Engage stakeholders in selection of intervention elements; (III) Obtain stakeholder input to increase intervention uptake/utility; (IV) Obtain stakeholder input on aspects of intervention design; and (V) Obtain stakeholder input on selection of outcome measures. Parent participants anticipated the resulting intervention, HEARTPrep, would be acceptable, useful, and feasible for parents expecting a baby with CHD. This model of intervention co-design could be used for the development of healthcare interventions across chronic diseases.

20.
Congenit Heart Dis ; 14(2): 236-245, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30324749

RESUMO

OBJECTIVE: Mortality rates for children with congenital heart disease (CHD) have significantly declined, resulting in a growing population with associated neurodevelopmental disabilities. American Heart Association guidelines recommend systematic developmental screening for children with CHD. The present study describes results of inpatient newborn neurodevelopmental assessment of infants after open heart surgery. OUTCOME MEASURES: We evaluated the neurodevelopment of a convenience sample of high-risk infants following cardiac surgery but before hospital discharge using an adaptation of the Newborn Behavioral Observation. Factor analysis examined relationships among assessment items and consolidated them into domains of development. RESULTS: We assessed 237 infants at a median of 11 days (interquartile range [IQR]: 7-19 days) after cardiac surgery and median corrected age of 21 days (IQR: 13-33 days). Autonomic regulation was minimally stressed or well organized in 14% of infants. Upper and lower muscle tone was appropriate in 33% and 35%, respectively. Appropriate response to social stimulation ranged between 7% and 12% depending on task, and state regulation was well organized in 14%. The vast majority (87%) required enhanced examiner facilitation for participation. Factor analyses of assessment items aligned into four domains of development (autonomic, motor, oral motor, and attention organization). CONCLUSION: At discharge, postoperative infants with CHD had impairments in autonomic, motor, attention, and state regulation following cardiac surgery. Findings highlight the challenges faced by children with CHD relative to healthy peers, suggesting that neurodevelopmental follow-up and intervention should begin early in infancy.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Deficiências do Desenvolvimento/diagnóstico , Cardiopatias Congênitas/cirurgia , Deficiências do Desenvolvimento/epidemiologia , Deficiências do Desenvolvimento/etiologia , Feminino , Seguimentos , Humanos , Incidência , Lactente , Recém-Nascido , Masculino , Massachusetts/epidemiologia , Período Pós-Operatório , Estudos Retrospectivos , Fatores de Risco , Fatores de Tempo
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