Improving usual care after sudden death in the young with focus on inherited cardiac diseases: A community-based intervention study

Christian Van Der Werf, Anneke Hendrix, Michiel Bots, Erwin Birnie, Aryan Vink, Henk Van Weert, Arthur A. Wilde, Arend Mosterd, Irene Van Langen

Research output: Contribution to journalArticleAcademicpeer-review


Introduction: Inherited cardiac diseases play an important role in sudden death (SD) in the young. Autopsy and cardiogenetic evaluation of relatives of young SD victims indentifies relatives at risk. We studied the usual care after SD in the young aimed at identifying inherited cardiac disease as the cause of death, and assessed efficacy of two interventions to improve this usual care. Methods: We conducted a community-based intervention study to increase autopsy rates of young SD victims (age 1 to 44 years) and referral of their relatives to cardiogenetic clinics. The study regions comprised 2 843 901 individuals. In the Amsterdam study region, a 24/7 central telephone number and a website were available to inform general practitioners (GPs) and coroners. In the Utrecht study region, they were informed by a letter and educational meetings. In two control regions usual care was monitored. The primary outcomes were the autopsy rates and the proportion of first-degree relatives attending a cardiogenetics department. Results: Autopsy was performed in 169 of the 390 registered SD cases (43.3%), and was higher in cases in no versus a relevant medical history (59.7% vs. 37.3%; P
Original languageEnglish
Pages (from-to)242
Number of pages1
JournalHeart Rhythm
Issue number5
Publication statusPublished - 1-May-2014


  • heart rhythm
  • community
  • intervention study
  • heart disease
  • society
  • sudden death
  • autopsy
  • human
  • victim
  • cause of death
  • hospital
  • prevention
  • general practitioner
  • risk assessment
  • cardiology
  • medical history
  • telephone
  • first degree relative
  • Netherlands
  • coroner
  • risk

Cite this