Abstract:
BACKGROUND:Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients' and parents' perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions. MATERIALS AND METHODS:Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD). The total sample (N = 818) was divided into four groups: "Children" (176 patients), "Adolescents" (142 patients), "Adults" (269 patients), and "Parents" (231 parents). The patients were stratified into those with simple and those with complex CHD. Descriptive and univariate analyses were performed. RESULTS:Patients' age and CHD severity were related to self-assessed state of health (P = .04 and P = .02). In addition, CHD severity was associated with worse impairment in everyday life (P < .001). Psychosocial support was related to the self-assessed state of health (P = .01) and the reported impairment in everyday life (P < .001). CONCLUSIONS:Patients' age, CHD severity, and psychosocial support seem to be related to self-assessed state of health and impairments in everyday life. To evaluate causality beyond associations, the development of patients' and parents' assessments and quality of life during the phase of transition from childhood to adulthood could be investigated by prospective long-term studies.
journal_name
Congenit Heart Disjournal_title
Congenital heart diseaseauthors
Helm PC,Kempert S,Körten MA,Lesch W,Specht K,Bauer UMMdoi
10.1111/chd.12581subject
Has Abstractpub_date
2018-05-01 00:00:00pages
377-383issue
3eissn
1747-079Xissn
1747-0803journal_volume
13pub_type
杂志文章,多中心研究abstract::A 52-year-old male patient, with a medical history of surgically repaired double outlet right ventricle presented with severe aortic stenosis (AS) and hepatitis C with cirrhosis, presented with New York Heart Association Class IV heart failure. During evaluation for a liver transplant, he was deemed a poor surgical ca...
journal_title:Congenital heart disease
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journal_title:Congenital heart disease
pub_type: 杂志文章,评审
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journal_title:Congenital heart disease
pub_type: 杂志文章
doi:10.1111/j.1747-0803.2007.00140.x
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journal_title:Congenital heart disease
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journal_title:Congenital heart disease
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journal_title:Congenital heart disease
pub_type: 杂志文章
doi:10.1111/j.1747-0803.2008.00231.x
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journal_title:Congenital heart disease
pub_type: 杂志文章
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journal_title:Congenital heart disease
pub_type: 杂志文章
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journal_title:Congenital heart disease
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更新日期:2018-11-01 00:00:00
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journal_title:Congenital heart disease
pub_type: 杂志文章
doi:10.1111/chd.12472
更新日期:2017-07-01 00:00:00
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pub_type: 杂志文章
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journal_title:Congenital heart disease
pub_type: 杂志文章
doi:10.1111/j.1747-0803.2006.00008.x
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journal_title:Congenital heart disease
pub_type: 杂志文章
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journal_title:Congenital heart disease
pub_type: 杂志文章
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journal_title:Congenital heart disease
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journal_title:Congenital heart disease
pub_type: 杂志文章,评审
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更新日期:2012-11-01 00:00:00
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pub_type: 杂志文章,meta分析,评审
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更新日期:2017-12-01 00:00:00
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journal_title:Congenital heart disease
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journal_title:Congenital heart disease
pub_type: 杂志文章
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更新日期:2015-01-01 00:00:00
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journal_title:Congenital heart disease
pub_type: 杂志文章
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更新日期:2014-09-01 00:00:00
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journal_title:Congenital heart disease
pub_type: 杂志文章
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更新日期:2018-07-01 00:00:00
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journal_title:Congenital heart disease
pub_type: 杂志文章
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journal_title:Congenital heart disease
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doi:10.1111/j.1747-0803.2010.00430.x
更新日期:2010-09-01 00:00:00
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journal_title:Congenital heart disease
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更新日期:2018-11-01 00:00:00