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Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
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.
Afiliación
  • Farr SL; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA. Electronic address: sfarr@cdc.gov.
  • Klewer SE; Department of Pediatrics, University of Arizona, Tucson, AZ.
  • Nembhard WN; Department of Epidemiology, Fay W Boozman College of Public Health and the Arkansas Center for Birth Defects Research and Prevention, University of Arkansas for Medical Sciences, Little Rock, AR.
  • Alter C; Perinatal Data Center, March of Dimes, Arlington, VA.
  • Downing KF; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
  • Andrews JG; Department of Pediatrics, University of Arizona, Tucson, AZ.
  • Collins RT; Departments of Pediatrics and Internal Medicine, Stanford University School of Medicine and Lucile Packard Children's Hospital Stanford, Stanford, CA.
  • Glidewell J; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
  • Benavides A; Department of Pediatrics, University of Arizona, Tucson, AZ.
  • Goudie A; Center for Applied Research and Evaluation, Department of Pediatrics, College of Medicine, Little Rock, AR.
  • Riehle-Colarusso T; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA.
  • Overman L; Department of Epidemiology, Fay W Boozman College of Public Health and the Arkansas Center for Birth Defects Research and Prevention, University of Arkansas for Medical Sciences, Little Rock, AR.
  • Riser AP; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA; Oak Ridge Institute for Science and Education, Oak Ridge, TN.
  • Oster ME; National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA; Children's Healthcare of Atlanta and Emory University School of Medicine, Atlanta, GA.
Am Heart J ; 221: 106-113, 2020 03.
Article en En | MEDLINE | ID: mdl-31986287
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Escolaridad / Servicios de Salud / Cardiopatías Congénitas Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Determinantes_sociais_saude / Patient_preference Límite: Adult / Female / Humans / Male País/Región como asunto: America do norte Idioma: En Revista: Am Heart J Año: 2020 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Escolaridad / Servicios de Salud / Cardiopatías Congénitas Tipo de estudio: Prognostic_studies / Qualitative_research Aspecto: Determinantes_sociais_saude / Patient_preference Límite: Adult / Female / Humans / Male País/Región como asunto: America do norte Idioma: En Revista: Am Heart J Año: 2020 Tipo del documento: Article Pais de publicación: Estados Unidos