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1.
Am Heart J ; 2024 Sep 17.
Artigo em Inglês | MEDLINE | ID: mdl-39299630

RESUMO

BACKGROUND: With improved survival of adults with congenital heart disease (CHD) comes a need to understand the lifelong outcomes of this population. The aim of this paper is to describe the rationale and design of Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE), a study to determine long-term medical, neurocognitive, and psychosocial outcomes among adults with a history of intervention for CHD and to identify factors associated with those outcomes. METHODS: CHD PULSE is a cross-sectional survey conducted from September 2021 to April 2023 among adults aged 18 and older with a history of at least one intervention for CHD at one of 11 participating U.S. centers in the Pediatric Cardiac Care Consortium. Participants with CHD were asked to complete a 99-question survey on a variety of topics including: demographics, surgeries, health insurance, health care, heart doctors, general health, height and weight, education and work history, reproductive health (for women only), and COVID-19. To construct a control group for the study, siblings of survey respondents were invited to complete a similar survey. Descriptive statistics for demographics, disease severity, center, and method of survey completion were computed for participants and controls. Comparisons were made between participants and non-participants to assess for response bias and between CHD participants and sibling controls to assess for baseline differences. RESULTS: Among the 14,322 eligible participants, there were 3133 respondents (21.9%) from 48 U.S. states with surveys returned for inclusion in the study. Sibling contact information was provided by 691 respondents, with surveys returned by 326 siblings (47.2%). The median age of participants was 32.8 years at time of survey completion, with an interquartile range of 27.2 years to 39.7 years and an overall range of 20.1 to 82.9 years. Participants were predominantly female (55.1%) and of non-Hispanic White race/ethnicity (87.1%). There were no differences between participants and non-participants regarding severity of CHD. Compared to non-participants, participants were more likely to be female, of older age, and be of non-Hispanic White race/ethnicity. Enrolled siblings were more likely to be female and slightly younger than participants. CONCLUSIONS: With surveys from 3133 participants from across the U.S., CHD PULSE is poised to provide keen insights into the lifelong journey of those living with CHD, extending beyond mere survival. These insights will offer opportunities for informing strategies to enhance and improve future outcomes for this population of patients.

2.
Am Heart J ; 268: 9-17, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37967642

RESUMO

BACKGROUND: Cardiovascular conditions are considered risk factors for poor outcomes associated with COVID-19. However, the effect of the COVID-19 pandemic on the mortality of patients with congenital heart disease (CHD) is unclear. Our study aims to examine the trends in mortality risk of CHD patients during the COVID-19 pandemic. METHODS: This is a retrospective cohort study from the Pediatric Cardiac Care Consortium, a US-based registry of interventions for CHD. We included patients having US residence and direct identifiers; death events were captured by matching with the National Death Index. The observation window (2017-2022) was divided into pre-COVID-19 and COVID-19 era defined around the national onset of COVID-19 disease in 2020. Stratified Cox model was used to assess all-cause mortality between the pre- and the COVID-19 era. RESULTS: Among 45,130 patients with CHD (median age in 2017: 23.3 years, IQR: 19.0-28.4), 503 deaths occurred during the pandemic with 44 deaths (8.7%) attributed to COVID-19 (COVID-19 mortality rate of 0.09%). The overall risk of death for patients with all types of CHD during the pandemic was significantly higher compared to the pre-COVID-19 era (aHR 1.28, 95%CI: 1.08-1.53), with a differential trend towards increased risk in patients with two-ventricle (aHR 1.44, 95% CI: 1.19-1.76) vs unchanged risk for those with single ventricle CHD (aHR = 0.83, 95% CI: 0.57-1.21). Adjusted subgroup analysis revealed a higher risk of death during the pandemic for CHD patients with male and chromosomal abnormalities. The excess deaths during the pandemic were attributed to COVID-19 itself rather than CHD or cardiovascular conditions. CONCLUSION: In this large CHD cohort study, there was a higher risk of death among CHD patients with male and chromosomal abnormalities. A differential trend towards higher risk for those with two vs. unchanged risk for single ventricle CHD was presented. The excess mortality was attributed to the COVID-19 itself and not to conditions potentially related to deferral of care. These results justify targeted protective measures towards the CHD population and may provide guidance for public health and medical care response in future epidemics.


Assuntos
COVID-19 , Doenças Cardiovasculares , Cardiopatias Congênitas , Humanos , Masculino , Criança , Adulto Jovem , Adulto , Estudos de Coortes , Pandemias , Estudos Retrospectivos , Aberrações Cromossômicas
3.
J Pediatr ; 164(1): 67-71.e2, 2014 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-24120017

RESUMO

OBJECTIVES: Screening for critical congenital heart disease with pulse oximetry requires healthcare providers to decipher a previously published algorithm, a feature that raises concerns about quality of interpretation of pulse oximetry results. We hypothesized that this method would be prone to error and a computer-based tool would lead to a more accurate interpretation of the screening results. STUDY DESIGN: In this randomized crossover study, healthcare providers with prior experience using pulse oximetry received 2 sets of 10 mock screening scenarios and were asked to interpret the results of each scenario as "pass," "fail," or "retest." Participants were randomized to use either the paper algorithm or computer-based tool for the first set of 10 scenarios and the alternative method for the second set. We used Wilcoxon rank sum tests to compare the accuracy of interpretation using the 2 methods. RESULTS: The 102 participants answered 81.6% of the scenarios correctly when manually interpreting the algorithm vs 98.3% correct when using the computer-based tool (P < .001). These differences were most pronounced for the "fail" scenarios (65.4% manual vs 96.7% computer, P < .001) and the "retest" scenarios (80.7% manual vs 98.7% computer, P < .001), but were also significant for the "pass" scenarios (94.1% manual vs 99.0% computer, P < .001). CONCLUSIONS: Use of a manual algorithm for the interpretation of results in screening for critical congenital heart disease with pulse oximetry is susceptible to human error. Implementation of a computer-based tool to aid in the interpretation of the results may lead to improved accuracy and quality.


Assuntos
Algoritmos , Cardiopatias Congênitas/diagnóstico , Triagem Neonatal/métodos , Melhoria de Qualidade , Estudos Cross-Over , Interpretação Estatística de Dados , Feminino , Humanos , Recém-Nascido , Masculino , Oximetria , Reprodutibilidade dos Testes
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