Abstract
Aim
This study explored attitudes, perceptions and physical activity behaviours in individuals with genetic heart disease (GHD), with a focus on how these have evolved as exercise guidelines have changed over time.Method
A series of surveys was conducted among patients with GHD from the Royal Prince Alfred Hospital GHD and Sports Cardiology Clinic. Eligible participants were consecutively approached and invited to participate. Surveys and questionnaires assessed self-efficacy, barriers and perceptions across three timeframes: the past 12 months, previous 5 years and previous 10 years. Current physical activity levels were assessed using the International Physical Activity Questionnaire-Short Form.Results
Ninety-nine participants with GHD completed the survey (mean age, 41±17 years; 52% female). Across all time periods, the influence of "doctor/cardiologist recommendations" as an exercise barrier decreased significantly (p=0.02). Seven-day physical activity recall showed that patients with channelopathies engaged in more walking and vigorous activity than patients with cardiomyopathies (p=0.004). Exercise participation rates were similar among patients at high and low risk of sudden cardiac death (p=0.17). Qualitative responses identified fear, fatigue and other non-diagnosis-related issues as potential barriers to exercise.Conclusions
In this contemporary cohort of patients with GHD, the influence of physician-directed restrictions appeared to diminish over time, coinciding with evolving guideline recommendations. Patients with channelopathies reported greater engagement in vigorous intensity activity than those with cardiomyopathies, likely reflecting preserved functional capacity rather than differences in perceived sudden cardiac death risk. Importantly, exercise participation did not differ according to clinical risk stratification. These findings highlight a shift towards more permissive exercise behaviours in GHD and underscore the need for phenotype-specific, evidence-based exercise guidance to optimise participation.