TY - JOUR
T1 - Rationale and design of CH STRONG
T2 - Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG: Rationale and design of CH STRONG
AU - Farr, Sherry L.
AU - Klewer, Scott E.
AU - Nembhard, Wendy N.
AU - Alter, Caroline
AU - Downing, Karrie F.
AU - Andrews, Jennifer G.
AU - Collins, R. Thomas
AU - Glidewell, Jill
AU - Benavides, Argelia
AU - Goudie, Anthony
AU - Riehle-Colarusso, Tiffany
AU - Overman, Lindsey
AU - Riser, Aspen P.
AU - Oster, Matthew E.
N1 - Funding Information:
The authors thank Margaret A. Honein, PhD; Jodi Jackson, PhD; Regina Simeone, MPH; Ginnie Abarbanell, MD; and Pam Costa, MS, for help with conceptualizing the project; Dr Nancy McClung for MACDP project coordination; the Geospatial Research, Analysis, and Services Program, a division of the Agency for Toxic Substances and Disease Registry at CDC, for providing material support for this research; Rebecca Russell and Sammi Cardoso for their commitment to and ongoing support for CH STRONG; Dr Ann Mertens, a former program manager for the Childhood Cancer Survivor Study, for guidance in the design of CH STRONG; the University of Arizona's Pediatric Multidisciplinary Research Unit and Division of Pediatric Cardiology for their support and help in this project; Mr Dan Sobkoviak, Senior Database Programmer, for assisting with the data extractions and merges required to complete this project; and Dr James Robbins, Professor of Pediatrics, for his contributions as Co-PI of this project before his retirement.
Funding Information:
CH STRONG was funded by the CDC and approved by the Institutional Review Boards at the CDC and the University of Arkansas for Medical Sciences. The University of Arizona deferred to the CDC Institutional Review Board. The US Office of Management and Budget approved CH STRONG data collection activities (OMB number: 0920-1122).
Publisher Copyright:
© 2020
PY - 2020/3
Y1 - 2020/3
N2 - 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.
AB - 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.
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U2 - 10.1016/j.ahj.2019.12.021
DO - 10.1016/j.ahj.2019.12.021
M3 - Article
C2 - 31986287
AN - SCOPUS:85078217428
VL - 221
SP - 106
EP - 113
JO - American Heart Journal
JF - American Heart Journal
SN - 0002-8703
ER -