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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., (Copyright © 2024. Published by Elsevier Inc.)

Historically, training in congenital heart surgery was variable and followed 1 of 3 pathways: residents identified during the primary training process were given the opportunity for a career training position within their own or other institution, residents would travel abroad for training and return to look for a faculty appointment based on their training experience, or a resident would enter a 1-year fellowship position after completing Thoracic Surgery training. These training opportunities and fellowships lacked uniformity and quality control. The purpose of an Accreditation Council of Graduate Medical Education (ACGME)-accredited residency program and an American Board of Thoracic Surgery subspecialty certificate in congenital heart surgery was to recognize and document a standard of education, operative experience, and cognitive knowledge for surgeons practicing in the field. There have been several important papers related to congenital cardiac training published over the years: (1) a manuscript by Kogon published in 2006 outlining congenital cardiac training prior to ACGME program accreditation, (2) a manuscript by Kogon et al published in 2016 outlining congenital cardiac training subsequent to ACGME accreditation with a focus on job transition and early work experience, and (3) a manuscript published in 2017 focusing primarily on job transition and early work experience. The purpose of this review is to provide an update with respect to congenital cardiac training. More importantly, in comparing survey results from these previous papers with the current survey, some interesting trends have been revealed, good and bad., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Cardiopulmonary bypass is known to trigger a global inflammatory response. Age-dependent differences in the inflammatory response, the increased susceptibility to injury of immature organ systems, and the larger extracorporeal circuit to patient size ratio results in greater susceptibility of younger and smaller patients to the damaging effects of cardiopulmonary bypass. In this review the components of the inflammatory response to cardiopulmonary bypass are reviewed with special reference to the pediatric age group, including the age-specific impact on organ systems. In addition the current and evolving strategies to prevent, limit, and treat the inflammatory response to cardiopulmonary bypass in children are examined.