Development and Evaluation of Decision Aids to Guide Families' Predictive Testing Choices for Children at Risk for Arrhythmia or Cardiomyopathy

Abstract

Background: Assessing the issues surrounding predictive genetic testing for children at risk of an inherited arrhythmia or cardiomyopathy is complex. The objective of this study was to design and evaluate 4 cardiac decision aids. The decision aids were developed to assist families with a genetic diagnosis of long QT syndrome, hypertrophic cardiomyopathy, dilated cardiomyopathy, or arrhythmogenic right ventricular cardiomyopathy in deciding between predictive genetic testing and cardiac screening for their children.

Methods: The decision aids were developed with the use of the International Patient Decision Aid Standards framework and revised based on feedback from individuals with lived experience, genetic counsellors, and other health professionals.

Results: Response to the decision aids was positive, and acceptability and understandability scores were high.

Conclusions: The decision aids can be used before, during or after a genetic counselling appointment as a resource or to guide discussion. These tools permit a balanced and consistent approach to the decision-making process, with a focus on the importance families place on the advantages and disadvantages of each option.