Evolving Decisions: Perspectives of Active and Athletic Individuals with Inherited Heart Disease Who Exercise Against Recommendations

Abstract

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.

Psychological Issues in Managing Families with Inherited Cardiovascular Diseases

“…Having friends and family participate with them in lower-intensity exercise was identified as something that helped them cope with the restrictions. A qualitative study explored perspectives of individuals with HCM and LQTS who continue to exercise against current recommendations and found many did make important modifications to their exercise program over time (Subas et al 2019). The value of a shared decision-making model in which the athlete's preferences are considered may be beneficial to addressing exercise restrictions.…”

Characterizing Decision-Making Surrounding Exercise in ARVC: Analysis of Decisional Conflict, Decisional Regret, and Shared Decision-Making

“…This was surprising because those who are particularly athletic are often considered more likely to be nonadherent with exercise guidelines, therefore we hypothesized they may be less likely to be engaged in SDM. 7 Perhaps most impactfully, we found that higher levels of SDM were associated with lower decisional conflict and decisional regret. This is important because DCS and DRS scores were relatively high and both have been associated with poor psychosocial and medical outcomes.…”

“…Many of those diagnosed with ARVC are highly active individuals for whom exercise restriction may be particularly challenging. 7,8 In recognition of this complexity, guidelines recommend that exercise decisions for those with or at risk for ARVC follow a shared decision-making (SDM) model. 6 SDM is an increasingly popular model in medicine that aims to increase patient autonomy and engagement in medical decision-making.…”

The Role of Genetics in the Management of Heart Failure Patients

“…This is achieved primarily through the development and computation of genomic risk scores (GRSs) [15,16], which enhance precision, efficacy, and predictability concerning potential diseases. Identifying individuals at heightened risk for prevalent chronic diseases paves the way for targeted preventive measures, such as increased health monitoring, early therapeutic interventions, lifestyle modifications [17,18], and specialized diagnostic procedures. Furthermore, when combined with risk scores, genetic data can predict a patient's response to therapy and potential side effects from certain medications.…”