Global approaches to cardiogenetic evaluation after sudden cardiac death in the young: A survey among health care professionals

Global approaches to cardiogenetic evaluation after sudden cardiac death in the young: A survey among health care professionals.

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Item Type: Article
Status: Published
Official URL:
Journal or Publication Title: Heart Rhythm
Volume: 18
Number: 10
Page Range: pp. 1637-1644
Date: October 2021
Divisions: Cardio Genomics
Molecular Cardiology
Depositing User: General Admin
Identification Number: 10.1016/j.hrthm.2021.03.037
ISSN: 15475271
Date Deposited: 07 Dec 2021 23:31

Background: Thorough investigation of sudden cardiac death (SCD) in those aged 1-40 years commonly reveals a heritable cause, yet access to postmortem genetic testing is variable.

Objective: The purpose of this study was to explore practices of postmortem genetic testing and attitudes of health care professionals worldwide.

Methods: A survey was administered among health care professionals recruited through professional associations, social media, and networks of researchers. Topics included practices around postmortem genetic testing, level of confidence in health care professionals' ability, and attitudes toward postmortem genetic testing practices.

Results: There were 112 respondents, with 93% from North America, Europe, and Australia/New Zealand, and 7% from South America, Asia and Africa. Only 30% reported autopsy as mandatory, and overall practices were largely case by case and not standardized. North American respondents (87%) more often perceived practices as ineffective compared to those from Europe (58%) and Australia/New Zealand (48%; P = .002). Where a heritable cause is suspected, 69% considered postmortem genetic testing and 61% offered genetic counseling to surviving family members. Financial resources varied widely. Half of participants believed practices in their countries perpetuated health inequalities.

Conclusion: Postmortem genetic testing is not consistently available in the investigation of young SCD despite being a recommendation in international guidelines. Access to postmortem genetic testing, which is critical in ascertaining a cause of death in many cases, must be guided by well-resourced, multidisciplinary teams.

Keywords: Health care professionals; Postmortem genetic testing; Procedures; Sudden cardiac death; Survey.

Copyright © 2021 Heart Rhythm Society. Published by Elsevier Inc. All rights reserved.

van den Heuvel, Lieke M.
Do, Judy
Yeates, Laura
MacLeod, Heather
James, Cynthia A.
Duflou, Johan
Skinner, Jonathan R.
Semsarian, Christopher
van Tintelen, J.Peter
Ingles, Jodie
Last Modified: 07 Dec 2021 23:31

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