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Disease-related difficulties and satisfaction with level of knowledge in adults with mild or complex congenital heart

Mascha Kamphuis1, S Pauline Verloove-Vanhorick, Ton Vogels

  • 1Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, The Netherlands.

Cardiology in the Young
|October 9, 2002
PubMed

Insights

Adults with congenital heart disease, especially complex cases, face daily life challenges and knowledge gaps. Improved counseling is needed to address these difficulties and enhance patient understanding of their condition.

Area of Science:

  • Cardiology
  • Medical Genetics
  • Patient Counseling

Background:

  • Congenital cardiac disease (congenital heart disease) affects individuals throughout their lives.
  • Understanding daily life difficulties and knowledge satisfaction is crucial for effective patient management.

Purpose of the Study:

  • To assess daily life challenges and knowledge levels in adult patients with congenital heart disease.
  • To identify areas for improvement in patient counseling strategies.

Main Methods:

  • A questionnaire was administered to 156 adult patients (80 mild, 76 complex congenital heart disease).
  • Participants ranged in age from 17 to 32 years.

Main Results:

  • 87% of complex congenital heart disease patients reported difficulties versus 11% with mild disease.
  • Complex cases experienced limitations in sports, employment, and education.
  • Significant knowledge gaps were reported regarding disease causes, future consequences, and family planning.

Conclusions:

  • Adults with congenital heart disease, particularly complex forms, encounter daily life obstacles.
  • Many patients express inadequate knowledge about their condition.
  • There is a clear need for tailored congenital heart disease counseling programs.
Abstract

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