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

Sherry L. Farr; Scott E. Klewer; Wendy N. Nembhard; Caroline Alter; Karrie F. Downing; Jennifer G. Andrews; R. Thomas Collins; Jill Glidewell; Argelia Benavides; Anthony Goudie; Tiffany Riehle-Colarusso; Lindsey Overman; Aspen P. Riser; Matthew E. Oster

doi:10.1016/j.ahj.2019.12.021

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

Sherry L. Farr
, Scott E. Klewer
, Wendy N. Nembhard
, Caroline Alter
, Karrie F. Downing
, Jennifer G. Andrews
, R. Thomas Collins
, Jill Glidewell
, Argelia Benavides
, Anthony Goudie
, Tiffany Riehle-Colarusso
, Lindsey Overman
, Aspen P. Riser
, Matthew E. Oster

Pediatrics

Producción científica: Article › revisión exhaustiva

21 Citas (Scopus)

Resumen

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.

Idioma original	English
Páginas (desde-hasta)	106-113
Número de páginas	8
Publicación	American Heart Journal
Volumen	221
DOI	https://doi.org/10.1016/j.ahj.2019.12.021
Estado	Published - mar 2020

Nota bibliográfica

Publisher Copyright:
© 2020

Financiación

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. 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).

Financiadores
Centers for Disease Control and Prevention
University of Northern Arizona
University of Arkansas for Medical Sciences

ASJC Scopus subject areas

Cardiology and Cardiovascular Medicine

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10.1016/j.ahj.2019.12.021

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Farr, S. L., Klewer, S. E., Nembhard, W. N., Alter, C., Downing, K. F., Andrews, J. G., Collins, R. T., Glidewell, J., Benavides, A., Goudie, A., Riehle-Colarusso, T., Overman, L., Riser, A. P., & Oster, M. E. (2020). Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG: Rationale and design of CH STRONG. American Heart Journal, 221, 106-113. https://doi.org/10.1016/j.ahj.2019.12.021

@article{68bb94ff6eda4cc9b95ab682d11b0b00,

title = "Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG: Rationale and design of CH STRONG",

abstract = "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.",

author = "Farr, \{Sherry L.\} and Klewer, \{Scott E.\} and Nembhard, \{Wendy N.\} and Caroline Alter and Downing, \{Karrie F.\} and Andrews, \{Jennifer G.\} and Collins, \{R. Thomas\} and Jill Glidewell and Argelia Benavides and Anthony Goudie and Tiffany Riehle-Colarusso and Lindsey Overman and Riser, \{Aspen P.\} and Oster, \{Matthew E.\}",

note = "Publisher Copyright: {\textcopyright} 2020",

year = "2020",

month = mar,

doi = "10.1016/j.ahj.2019.12.021",

language = "English",

volume = "221",

pages = "106--113",

}

Farr, SL, Klewer, SE, Nembhard, WN, Alter, C, Downing, KF, Andrews, JG, Collins, RT, Glidewell, J, Benavides, A, Goudie, A, Riehle-Colarusso, T, Overman, L, Riser, AP & Oster, ME 2020, 'Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG: Rationale and design of CH STRONG', American Heart Journal, vol. 221, pp. 106-113. https://doi.org/10.1016/j.ahj.2019.12.021

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.

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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UR - https://www.scopus.com/pages/publications/85078217428#tab=citedBy

U2 - 10.1016/j.ahj.2019.12.021

DO - 10.1016/j.ahj.2019.12.021

M3 - Article

C2 - 31986287

AN - SCOPUS:85078217428

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JO - American Heart Journal

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ER -

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

Resumen

Nota bibliográfica

Financiación

ASJC Scopus subject areas

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