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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 1 intervention for CHD at 1 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 3,133 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 nonparticipants, 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 3,133 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 Elsevier Inc. All rights reserved.)

Objective: To describe the structure of networks in a cohort of mothers and to analyze associations of social network characteristics and norms with infant sleep practices., Study Design: We recruited a prospective cohort of mothers with infants <6 months of age from January 2015 to December 2016. Mothers completed a survey about their personal social networks and infant care practices. Latent class analysis identified unobserved network types. Binary statistics and path analysis were performed., Results: Overall, 402 mothers were surveyed. Latent class analysis identified 2 a priori unknown social network types: "exclusive" (restricted) and "expansive." Mothers who were black, younger, unmarried, less educated, and of lower socioeconomic status were more likely to have exclusive networks than expansive networks. Mothers with exclusive networks were more likely to be exposed to the norm of soft bedding (P = .002). Exposure to norms of non-supine infant placement, bedsharing, and soft bedding use within one's network was associated with engaging in these practices (P < .0001 for each). First-time mothers were more likely to pay attention to a non-supine norm and place infants in a non-supine position. Black mothers and first-time mothers were more likely to pay attention to the norm and use soft bedding., Conclusions: Both the type of networks mothers have and the norms regarding infant sleep practices that circulate within these networks differed by race. Network norms were strongly associated with infant sleep practices and may partially explain the racial disparity therein., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: To evaluate the impact of specific health messages on the decisions of African American parents regarding soft bedding use, specifically related to the high degree of self-efficacy that African American parents have with regards to preventing infant suffocation vs low self-efficacy with regards to sudden infant death syndrome (SIDS) risk reduction., Study Design: We conducted a randomized, controlled clinical trial of African American mothers of infants. The control group received standard messaging emphasizing safe sleep practices recommended by the American Academy of Pediatrics for the purposes of SIDS risk reduction. The intervention group received enhanced messaging emphasizing safe sleep practices for both SIDS risk reduction and suffocation prevention. Participants completed interviews at 2-3 weeks, 2-3 months, and 5-6 months after the infant's birth., Results: Of 1194 mothers enrolled, 637 completed all interviews. The use of soft bedding both in the past week and last night declined with age (P < .001). Infants in the enhanced group had a lower rate of use of soft bedding in the past week (P = .006) and last night (P = .013). Mothers who received the enhanced message were more likely to state that they avoided soft bedding to protect their infant from suffocation., Conclusions: African American mothers who receive an enhanced message about SIDS risk reduction and suffocation prevention are less likely to use soft bedding in their infant's sleep environment., Trial Registration: ClinicalTrials.gov: NCT01361880., (Copyright © 2016 Elsevier Inc. All rights reserved.)