Experiences, considerations and emotions relating to cardiogenetic evaluation in relatives of young sudden cardiac death victims

Christian van der Werf, Astrid T. Onderwater, Irene M. van Langen, Ellen M. A. Smets*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

18 Citations (Scopus)

Abstract

Relatives of young sudden cardiac death (SCD) victims are at increased risk of carrying a potentially fatal inherited cardiac disease. Hence, it is recommended to perform an autopsy on the victim and to refer his or her relatives to a cardiogenetics clinic for a full evaluation to identify those at risk and allow preventive measures to be taken. However, at present, the number of families attending a cardiogenetics clinic after the SCD of a young relative is low in the Netherlands. We performed a qualitative study and report on the experiences and attitudes of first-degree relatives who attended a cardiogenetics clinic for evaluation. In total, we interviewed nine first-degree relatives and one spouse of seven SCD victims about their experiences, considerations and emotions before attendance and at the first stage of the cardiogenetic evaluation before DNA results were available. Interviews were transcribed verbatim and analysed. Medical professionals did not have an important role in informing or referring relatives to a cardiogenetics clinic. Importantly, all participants indicated that they would have appreciated a more directive approach from medical professionals, because their mourning process hampered their own search for information and decision-making. A need to understand the cause of death and wanting to prevent another SCD event occurring in the family were the most important reasons for attending a clinic. There are possibilities to improve the information process and better support their decision-making. The multidisciplinary cardiogenetic evaluation was appreciated, but could be improved by minor changes in the way it is implemented.

Original languageEnglish
Pages (from-to)192-196
Number of pages5
JournalEuropean Journal of Human Genetics
Volume22
Issue number2
DOIs
Publication statusPublished - 1-Feb-2014

Keywords

  • sudden cardiac death
  • cardiogenetics
  • experiences
  • considerations
  • emotions
  • qualitative research
  • LONG QT SYNDROME
  • QUALITATIVE RESEARCH
  • UNEXPECTED DEATH
  • RISK
  • AUTOPSY
  • DISEASE
  • FAMILY
  • NEEDS

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