Evolving Decisions: Perspectives of Active and Athletic Individuals with Inherited Heart Disease Who Exercise Against Recommendations
Individuals with hypertrophic cardiomyopathy (HCM) and long QT syndrome (LQTS) are advised to avoid certain forms of exercise to reduce their risk of sudden death. Cardiovascular genetic counselors facilitate both adaptation to, and decision-making about, these exercise recommendations. This study describes decision-making and experiences of active adults who exercise above physicians’ recommendations. Purposive sampling was used to select adults with HCM and LQTS who self-identified as exercising above recommendations. Semi-structured interviews explored participants’ decision-making and the psychological impact of exercise recommendations. Fifteen individuals were interviewed (HCM: 10; LQTS: 5; mean age: 40). Transcripts were coded and analyzed for underlying themes. Despite exercising above recommendations, nearly all participants made some modifications to their prior exercise regimen. Often these decisions changed over time, underscoring the importance of shared decision-making conversations beyond the initial evaluation. The importance of exercise was frequently cited as a reason for continued exercise, as were perceptions of sudden death risk as low, acceptable, or modifiable. Many participants reported that family and friends supported their exercise decisions, with a minority having family or friends that expressed significant reservations. Genetic counselors, cardiologists, and nurses can use these data to inform their counseling regarding exercise recommendations.
KeywordsExercise Athlete Sports participation Recreational sports Exercise restriction Long QT syndrome Hypertrophic cardiomyopathy Genetic counseling
This paper was done with the support of the Stanford Genetic Counseling program as the first author was a trainee at the time of the study. The work was conducted as part of the first author’s graduate genetic counseling training. The authors thank the participants for donating their time and sharing their experiences and Dr. Sylvia Bereknyei and Dr. Janine Bruce for their assistance with qualitative methodology.
Trishna Subas contributed to study design, collection of quantitative data, conducted participant interviews, developed and revised the codebook, analyzed data, wrote and revised drafts of the manuscript, and approved the final manuscript. Rebecca Luiten contributed to study design, collected quantitative data, revised the codebook, edited manuscript drafts, and approved the final manuscript. Andrea Hanson-Kahn contributed to study design, assisted with codebook revisions, edited manuscript drafts, and approved the final manuscript. Matthew Wheeler contributed to study design, discussed emerging themes, edit manuscript drafts, and approved the final manuscript. Colleen Caleshu contributed to conceptualization of the project and study design, edited manuscript drafts, analyzed data, and approved the final manuscript. All authors agree to be accountable for the accuracy and integrity of the research presented.
Compliance with Ethical Standards
Conflict of Interest
Trishna Subas, Rebecca Luiten, Andrea Hanson-Kahn, Matthew Wheeler, and Colleen Caleshu declare that they have no conflicts of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
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