Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG.
Am Heart J
; 221: 106-113, 2020 03.
Article
em En
| MEDLINE
| ID: mdl-31986287
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.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Escolaridade
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Serviços de Saúde
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Cardiopatias Congênitas
Tipo de estudo:
Prognostic_studies
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Qualitative_research
Limite:
Adult
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Female
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Humans
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Male
País/Região como assunto:
America do norte
Idioma:
En
Revista:
Am Heart J
Ano de publicação:
2020
Tipo de documento:
Article