Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-being

Details

• Alternative Title:
  Am Heart J
• Personal Author:
  Farr, Sherry L. ; Klewer, Scott E. ; Nembhard, Wendy N. ; Alter, Caroline ; Downing, Karrie F. ; Andrews, Jennifer G. ; Collins, R. Thomas ; Glidewell, Jill ; Benavides, Argelia ; Goudie, Anthony ; Riehle-Colarusso, Tiffany ; Overman, Lindsey ; Riser, Aspen P. ; Oster, Matthew E.
• Description:
  Background
  
  Studies of outcomes among adults with congenital heart defects (CHDs) have focused on those receiving cardiac care, limiting generalizability. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) will assess comorbidities, health care utilization, quality of life, and social and educational outcomes from a US population-based sample of young adults living with CHD.
  
  Methods
  
  Individuals with CHD born between 1980 and 1997 were identified using active, population-based birth defects surveillance systems from 3 US locations (Arkansas [AR]; Arizona [AZ]; and Atlanta, Georgia [GA]) linked to death records. Individuals with current contact information responded to mailed survey materials during 2016 to 2019. Respondents and nonrespondents were compared using χ2 tests.
  
  Results
  
  Sites obtained contact information for 74.6% of the 9,312 eligible individuals alive at recruitment. Of those, 1,656 returned surveys, either online (18.1%) or via paper (81.9%), for a response rate of 23.9% (AR: 18.3%; AZ: 30.7%; Atlanta, GA: 28.0%; P value < .01). For 20.0% of respondents, a proxy completed the survey, with 63.9% reporting that the individual with CHD was mentally unable. Among respondents and nonrespondents, respectively, sex (female: 54.0% and 47.3%), maternal race/ethnicity (non-Hispanic white: 74.3% and 63.0%), CHD severity (severe: 33.8% and 27.9%), and noncardiac congenital anomalies (34.8% and 38.9%) differed significantly (P value < .01); birth year (1991–1997: 56.0% and 57.5%) and presence of Down syndrome (9.2% and 8.9%) did not differ.
  
  Conclusions
  
  CH STRONG will provide the first multisite, population-based findings on long-term outcomes among the growing population of US adults with CHD.
  
  
• Subjects:
  Adult Comorbidity Educational Status Female Health Services Heart Defects, Congenital Humans Male Needs Assessment Quality Of Life Surveys And Questionnaires Young Adult

  More +
• Source:
  Am Heart J. 221:106-113
• Pubmed ID:
  31986287
• Pubmed Central ID:
  PMC9141095
• Document Type:
  Journal Article
• Funding:
  CC999999/ImCDC/Intramural CDC HHSUnited States/
• Place as Subject:
  United States
• Volume:
  221
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:27793f9852b346dd53355ff944ba0a2a79155a79e16daff36519745ecc02f97a
• Download URL:
  https://stacks.cdc.gov/view/cdc/119200/cdc_119200_DS1.pdf
• File Type:
  [PDF - 622.79 KB ]