Publications by authors named "Caren S Goldberg"

Objective(s): To examine feasibility, acceptability, and preliminary effectiveness of a novel group-based telemedicine psychoeducation programme aimed at supporting psychological well-being among adolescents with Fontan-palliated CHD.

Study Design: A 5-week telemedicine psychoeducation group-based programme (WE BEAT) was developed for adolescents ( = 20; 13-18 years) with Fontan-palliated CHD aimed at improving resiliency and psychological well-being. Outcome measures included surveys of resilience (Connor-Davidson Resilience Scale), benefit finding (Benefit/Burden Scale for Children), depression, anxiety, peer relationships, and life satisfaction (National Institutes of Health Patient-Reported Outcomes Measurement Information System scales).

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  • * Researchers found that while most children had normal neurodevelopmental scores, a significant number displayed issues, especially as they grew older; specific factors like low birth weight and maternal education influenced outcomes.
  • * The findings suggest that children with sTOF may have elevated developmental concerns, and although the type of surgical intervention didn't seem to affect these outcomes, other risks like genetic syndromes are important to consider for early intervention.
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Population size is an important metric to inform the conservation and management of species. For aquatic species, environmental DNA (eDNA) concentration has been suggested for non-invasively estimating population size. However, many biotic and abiotic factors simultaneously influence the production and degradation of eDNA which can alter the relationship between population size and eDNA concentration.

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Individuals with congenital heart disease (CHD) have an increased risk of neurodevelopmental impairments. Given the hypothesized complexity linking genomics, atypical brain structure, cardiac diagnoses and their management, and neurodevelopmental outcomes, unsupervised methods may provide unique insight into neurodevelopmental variability in CHD. Using data from the Pediatric Cardiac Genomics Consortium Brain and Genes study, we identified data-driven subgroups of individuals with CHD from measures of brain structure.

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  • Advances in medical and surgical care are allowing more children with congenital heart disease to survive into adulthood, but many face chronic heart failure as a significant complication.
  • There are unique challenges related to heart failure in this population due to their specific heart abnormalities, which complicate conventional adult treatments.
  • Increased collaboration and standardization in defining and studying heart failure in children with congenital heart disease are essential for developing effective, evidence-based therapies to improve their health outcomes.
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Necrotizing enterocolitis (NEC) increases morbidity and mortality for infants with single ventricle heart disease (SVHD). While hematochezia often proceeds NEC not all hematochezia progresses to NEC. We aimed to examine the incidence, risk-factors, and outcomes associated with hematochezia and NEC for infants with SVHD.

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  • Patients aged 13-30 with complex congenital heart disease (CHD) often face significant neurocognitive impairments and lower quality of life, especially after undergoing pulmonary valve replacement procedures.
  • A study involving 68 patients found that while executive function deficits and reduced quality of life were prevalent, there were no noticeable differences between those receiving surgical or transcatheter valve replacements.
  • Understanding how different treatment methods impact long-term neurocognitive and quality of life outcomes could provide valuable information for improving care in adolescents and young adults with severe CHD.
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Background: Heart failure results in significant morbidity and mortality for young children with hypoplastic left heart syndrome (HLHS) following the Norwood procedure. The trajectory in later childhood is not well described.

Methods: We studied the outcome into adolescence of participants enrolled in the Single Ventricle Reconstruction trial who underwent the Fontan procedure or survived to 6 years without having undergone Fontan procedure.

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Objective: In the SVR trial (Single Ventricle Reconstruction), newborns with hypoplastic left heart syndrome were randomly assigned to receive a modified Blalock-Taussig-Thomas shunt (mBTTS) or a right ventricle-to-pulmonary artery shunt (RVPAS) at Norwood operation. Transplant-free survival was superior in the RVPAS group at 1 year, but no longer differed by treatment group at 6 years; both treatment groups had accumulated important morbidities. In the third follow-up of this cohort (SVRIII [Long-Term Outcomes of Children With Hypoplastic Left Heart Syndrome and the Impact of Norwood Shunt Type]), we measured longitudinal outcomes and their risk factors through 12 years of age.

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  • The study investigates the attendance rates for neurodevelopmental evaluations in toddlers with complex congenital heart disease and identifies factors influencing their participation.
  • Among 2385 eligible patients from 16 cardiac centers, only 29% attended the evaluation, with variation in attendance rates across centers.
  • Key factors enhancing attendance included hospital-initiated scheduling, antenatal diagnosis, absence of Trisomy 21, and having private insurance, indicating a need for improved program design to increase participation.
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Applications of environmental DNA (eDNA) analysis methods for biomonitoring have grown exponentially over the last decade and provide a wealth of new information on the distribution of species. However, eDNA methods have limited application for estimating population-level metrics. Environmental RNA (eRNA) has the potential to address ecological questions by gathering population demographic information from environmental media but may be challenging to detect and analyze.

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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.

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  • * The SVRIII Brain Connectome study aims to analyze neuroimaging from patients and healthy controls but has faced recruitment and logistical challenges, especially during the COVID-19 pandemic.
  • * Solutions included adding more study sites, improving coordination among researchers, and implementing new strategies for recruiting healthy controls while also overcoming technical issues with neuroimage collection.
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Unlabelled: Patients with hypoplastic left heart syndrome who have been palliated with the Fontan procedure are at risk for adverse neurodevelopmental outcomes, lower quality of life, and reduced employability. We describe the methods (including quality assurance and quality control protocols) and challenges of a multi-center observational ancillary study, SVRIII (Single Ventricle Reconstruction Trial) Brain Connectome. Our original goal was to obtain advanced neuroimaging (Diffusion Tensor Imaging and Resting-BOLD) in 140 SVR III participants and 100 healthy controls for brain connectome analyses.

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Background: Studies have shown that diverse care teams optimize patient outcomes. Describing the current representation of women and minorities has been a critical step in improving diversity across several fields.

Objectives: To address the lack of data specific to pediatric cardiology, the authors conducted a national survey.

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  • Neurodevelopmental disabilities often occur in individuals with congenital heart disease (CHD), but only a small portion of this is explained by medical and social factors.
  • The study aimed to investigate the connection between damaging gene variants (dDNVs) that haven't been previously linked to these disabilities and neurological outcomes in CHD patients.
  • Conducted across eight US centers, the study analyzed 221 participants' neurodevelopmental assessments and various brain imaging metrics, finding that differences in the presence of dDNVs might relate to differing neurological outcomes.
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The amphibian chytrid fungus (Bd) has caused declines and some extinctions of amphibian populations worldwide. Early and accurate Bd detection is essential for management of susceptible anurans. We analyzed the effectiveness of in situ DNA extraction with a handheld mobile quantitative PCR (qPCR) thermocycler to detect Bd on frog skin swabs and in water samples using environmental DNA (eDNA).

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Invasive species and emerging infectious diseases are two of the greatest threats to biodiversity. American Bullfrogs (Rana [Lithobates] catesbeiana), which have been introduced to many parts of the world, are often linked with declines in native amphibians via predation and the spread of emerging pathogens such as amphibian chytrid fungus (Batrachochytrium dendrobatidis [Bd]) and ranaviruses. Although many studies have investigated the potential role of bullfrogs in the decline of native amphibians, analyses that account for shared habitat affinities and imperfect detection have found limited support for clear effects.

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Objective: Racial and ethnic disparities are commonplace in health care. Research often relies on sociodemographic information recorded in the electronic health record (EHR). Little evidence is available about the accuracy of EHR-recorded sociodemographic information, and none in pediatrics.

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Sampling fecal droppings (scat) to genetically identify individual animals is an established method for monitoring mammal populations and could be highly useful for monitoring reptile populations. Whereas existing protocols for obtaining DNA from reptile scat focus on analyses of whole, fresh scat deposited during animal handling, the collection of scat naturally deposited by reptiles in situ, as required for non-invasive population monitoring, requires protocols to extract highly degraded DNA. Using surface swabs from such scats can reduce PCR inhibition and increase genotyping success.

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Background: The Single Ventricle Reconstruction (SVR) Trial was the first randomized clinical trial of a surgical approach for treatment of congenital heart disease. Infants with hypoplastic left heart syndrome (HLHS) and other single right ventricle (RV) anomalies were randomized to a modified Blalock Taussig Thomas shunt (mBTTS) or a right-ventricular-to-pulmonary-artery shunt (RVPAS) at the time of the Norwood procedure. The aim of the Long-term Outcomes of Children with HLHS and the Impact of Norwood Shunt Type (SVR III) study is to compare early adolescent outcomes including measures of cardiac function, transplant-free survival, and neurodevelopment, between those who received a mBTTS and those who received an RVPAS.

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Background: Studies examining the impact of randomization As per standard instruction, city is required for affiliations; however, this information is missing in affiliation 6. Please check if the provided city is correct and amend if necessary. to tight glycemic control (TGC) and resultant hypoglycemia on later neurodevelopmental outcomes have produced mixed results.

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Introduction: Health-related quality of life in children who have undergone the Ross procedure has not been well characterised. The aim of this study was to characterise health-related quality of life in this cohort and compare to children with other CHD.

Method: In this cross sectional, single-centre study, health-related quality of life was assessed in patients who underwent a non-neonatal Ross procedure using the Pediatric Quality of Life Inventory.

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