Journal article
Rationale and Design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience
The American heart journal, Vol.278, pp.150-160
12/2024
DOI: 10.1016/j.ahj.2024.09.003
PMCID: PMC11806948
PMID: 39299630
Abstract
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.
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.
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.
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.
Details
- Title: Subtitle
- Rationale and Design of CHD PULSE: Congenital Heart Disease Project to Understand Lifelong Survivor Experience
- Creators
- Matthew E. Oster - Emory University School of MedicineYanxu Yang - Emory University School of MedicineCaroline Shi - Emory University School of MedicineSusan Anderson - Emory University School of MedicineJessica Knight - University of GeorgiaLogan G. Spector - University of MinnesotaOsamah Aldoss - University of IowaCharles E. Canter - Washington University in St. Louis School of MedicineMansi Gaitonde - The University of Texas Southwestern Medical CenterGugurmurthy Hiremath - University of MinnesotaAnitha John - Children's NationalDeborah J. Kozik - University of LouisvilleBradley S. Marino - Cleveland ClinicKimberly E. McHugh - Medical University of South CarolinaDavid Overman - Children's MinnesotaGeetha Raghuveer - Children's Mercy HospitalJames Louis - Augusta UniversityJeffrey Jacobs - University of FloridaMichelle Gurvitz - Harvard UniversityGrace Smith - Emory University School of MedicineJ'Neka S. Claxton - Emory University School of MedicineKristina Kuo - Emory University School of MedicineJessica M. Flores - Emory University School of MedicineRomie N. Velani - Emory University School of MedicineAmanda Thomas - Emory University School of MedicineAnn Mertens - Emory University School of MedicineMason Basler - Washington University in St. Louis School of MedicineViolet Carey - University of LouisvilleCharlotte Gavalas - Augusta UniversityMadison Johnson - Medical University of South CarolinaAnita Mathews - Children's NationalJennifer Nelson - Mercy HospitalKatrin O'Grady - Children's MinnesotaEmily Riley - Division of Pediatric Cardiology Stead Family Department of Pediatrics, University of Iowa and Carver College of Medicine, University of Iowa Children's Hospital, Iowa City, IAMichelle Roesler - University of MinnesotaAmber Sykes - Cleveland ClinicDaniel Young - The University of Texas Southwestern Medical CenterLazaros K. Kochilas - Emory University School of Medicine
- Resource Type
- Journal article
- Publication Details
- The American heart journal, Vol.278, pp.150-160
- DOI
- 10.1016/j.ahj.2024.09.003
- PMID
- 39299630
- PMCID
- PMC11806948
- NLM abbreviation
- Am Heart J
- ISSN
- 0002-8703
- eISSN
- 1097-6744
- Publisher
- Elsevier Inc
- Grant note
- National Heart, Lung, and Blood Institute: HL122392
Funding support This study was supported by the National Heart, Lung, and Blood Institute (HL122392) .
- Language
- English
- Electronic publication date
- 09/17/2024
- Date published
- 12/2024
- Academic Unit
- Stead Family Department of Pediatrics
- Record Identifier
- 9984708763302771
Metrics
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