In-Hospital Death and End-of-Life Status Among Patients With Adult Congenital Heart Disease　― A Retrospective Study Using the JROAD-DPC Database in Japan ―

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  • Akiyama Naomi
    Department of Nursing, School of Medicine, Yokohama City University
  • Ochiai Ryota
    Department of Nursing, School of Medicine, Yokohama City University
  • Nitta Manabu
    Department of Cardiology, Yokohama City University Graduate School of Medicine Center for Novel and Exploratory Clinical Trials (Y-NEXT), Yokohama City University Hospital
  • Shimizu Sayuri
    Department of Health Data Science, Graduate School of Data Science, Yokohama City University
  • Kaneko Makoto
    Department of Health Data Science, Graduate School of Data Science, Yokohama City University
  • Kuraoka Ayako
    Department of Pediatric Cardiology, Fukuoka Children’s Hospital
  • Nakai Michikazu
    Department of Medical and Health Information Management, National Cerebral and Cardiovascular Center Clinical Research Support Center, University of Miyazaki Hospital
  • Sumita Yoko
    Department of Medical and Health Information Management, National Cerebral and Cardiovascular Center
  • Ishizu Tomoko
    Department of Cardiology, Institute of Medicine, University of Tsukuba

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<p>Background: The end-of-life (EOL) status, including age at death and treatment details, of patients with adult congenital heart disease (ACHD) remains unclear. This study investigated the EOL status of patients with ACHD using a nationwide Japanese database.</p><p>Methods and Results: Data on the last hospitalization of 26,438 patients with ACHD aged ≥15 years, admitted between 2013 and 2017, were included. Disease complexity (simple, moderate, or great) was classified using International Classification of Diseases, 10th Revision codes. Of the 853 deaths, 831 patients with classifiable disease complexity were evaluated for EOL status. The median age at death of patients in the simple, moderate, and great disease complexity groups was 77.0, 66.5, and 39.0 years , respectively. The treatments administered before death to patients in the simple, moderate, and great complexity groups included cardiopulmonary resuscitation (30.1%, 35.7%, and 41.9%, respectively), percutaneous cardiopulmonary support (7.2%, 16.5%, and 16.3%, respectively), and mechanical ventilation (58.7%, 72.2%, and 75.6%, respectively). Overall, 70% of patients died outside of specialized facilities, with >25% dying after ≥31 days of hospitalization.</p><p>Conclusions: Nationwide data showed that patients with ACHD with greater disease complexity died at a younger age and underwent more invasive treatments before death, with many dying after ≥1 month of hospitalization. Discussing EOL options with patients at the appropriate time is important, particularly for patients with greater disease complexity.</p>

収録刊行物

  • Circulation Journal

    Circulation Journal 88 (5), 631-639, 2024-04-25

    一般社団法人 日本循環器学会

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