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Are adults with congenital heart disease informed about their risk for infective endocarditis and treated in accordance to current guidelines?

  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Ulrike M.M. Bauer
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    National Register for Congenital Heart Defects, DZHK (German Centre for Cardiovascular Research), Berlin, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Paul C. Helm
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    National Register for Congenital Heart Defects, DZHK (German Centre for Cardiovascular Research), Berlin, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Gerhard-Paul Diller
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    Division of Adult Congenital and Valvular Heart Disease, Department of Cardiovascular Medicine, University Hospital Muenster, Muenster, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Boulos Asfour
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    National Register for Congenital Heart Defects, DZHK (German Centre for Cardiovascular Research), Berlin, Germany

    Asklepios Klinik Sankt Augustin GmbH, German Pediatric Heart Center, Sankt Augustin, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Christian Schlensak
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    University Department of Thoracic and Cardiovascular Surgery, Tübingen, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Katharina Schmitt
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    Deutsches Herzzentrum Berlin, DZHK (German Centre for Cardiovascular Research), Partnersite, Berlin, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Peter Ewert
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    Department of Paediatric Cardiology and Congenital Heart Disease, German Heart Centre Munich, Technical University of Munich, Munich, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
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  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Oktay Tutarel
    Correspondence
    Corresponding author at: Department of Paediatric Cardiology and Congenital Heart Disease, German Heart Centre Munich, Lazarettstr. 36, Munich, Germany.
    Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.
    Affiliations
    Department of Paediatric Cardiology and Congenital Heart Disease, German Heart Centre Munich, Technical University of Munich, Munich, Germany

    Competence Network for Congenital Heart Defects, Berlin, Germany, DZHK (German Centre for Cardiovascular Research), Berlin, Germany
    Search for articles by this author
  • Author Footnotes
    1 These authors take responsibility for all aspects of the reliability and freedom from bias of the data presented and their discussed interpretation.

      Abstract

      Background

      Adults with congenital heart disease (ACHD) have an increased risk for infective endocarditis (IE). In the last decade, the recommendations for IE prophylaxis have changed substantially. The knowledge level of patients about IE and IE prophylaxis has not been studied.

      Methods

      Patients recruited via the German National Register for Congenital Heart Defects were invited to an online survey about IE. Patients were divided into two groups based on ESC guidelines: high IE risk (antibiotic prophylaxis recommended) and low IE risk (prophylaxis not recommended).

      Results

      Overall, 1458 patients participated and out of these 1211 (age 30.5 ± 11.8 years, female = 54.2%) with detailed clinical information were further analyzed. 343 patients had a high IE risk, whereas 868 had a low risk. Overall, 74.5% (n = 902) stated to know what IE is (low IE risk: 71.3%, high IE risk: 82.5%) Out of these who stated to know what IE is (n = 902), 76.5% (n = 690) chose the correct answer in a multiple choice question (low IE risk: 76.4%; high IE risk: 76.7%). Antibiotic prophylaxis was known to 66.2% (low IE risk: 59.9%; high IE risk: 82.2%). Out of these who stated to know what antibiotic prophylaxis is (n = 802), 83.8% (n = 672) chose the correct answer in a multiple choice question (low IE risk: 82.9%; high IE risk: 85.5%).

      Conclusions

      This study reveals important knowledge gaps regarding IE and antibiotic prophylaxis in ACHD patients. A discussion about IE and antibiotic prophylaxis should take place with every ACHD patient during regular clinical contacts to close this knowledge gap.

      Keywords

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