Following a diagnosis of arrhythmogenic cardiomyopathy, patient participation in intense exercise decreased from 13.9% to 2%, though only 33% found their exercise counselling clear.
Cross-Sectional (n=194)
No
While patients with arrhythmogenic cardiomyopathy appropriately reduce exercise intensity post-diagnosis, there is significant room for improvement in the clarity and follow-up of exercise counselling.
Abstract Background The impact of continuation of moderate and intense exercise after a diagnosis of arrhythmogenic cardiomyopathy (ACM) remains largely unknown. This study aimed to evaluate exercise behaviour and the adequacy of exercise counselling among patients managed at a tertiary sports cardiology centre. Methods A cross-sectional, survey-based evaluation was administered to 194 patients with a confirmed diagnosis of ACM or carriers of pathogenic variants, followed at a large tertiary referral centre. The 32-item questionnaire assessed exercise participation before and after diagnosis, counselling frequency, clarity and personalisation, follow-up, and patient satisfaction. Responses were collected through an online survey platform or structured phone interviews. Results Of 194 patients included in the cohort (age 48 ± 17 years, 59% male), 158 (81%) responded to the survey, while 36 did not participate. Among respondents, 26 (16%) were genotype-positive/phenotype-negative. Before clinical assessment, 22 (13.9%) of patients engaged in intense exercise and 72 (45.6%) in moderate activity, while 52 (32.9%) reported mild exercise and 12 (7.6%) were sedentary. After diagnosis, participation in running (15.7%→11.5%), cycling (8.1%→ 6.4%), and swimming (4.0%→ 2.8%) decreased, while those reporting no structured exercise increased (7.2%→ 10.1%). Weekly exercise hours decreased substantially after diagnosis, with most patients shifting to lower-duration training categories (Figure 1). Post-diagnosis exercise intensity was predominantly mild (103; 65%) or moderate (52; 33%), with only 3 (2%) reporting intense exercise. A personalised exercise plan was reported by 103 (65%), yet only 52 (33%) found the recommendations clear and comprehensive (Figure 1). 107 (68%) reported no subsequent contact regarding their exercise recommendations. Overall satisfaction with the counselling received was modest (satisfied/very satisfied: 47 (30%); neutral: 65 (41%); dissatisfied/very dissatisfied: 30 (19%)). Most patients, 122 (77%), believed exercise could play a positive role in their condition. Conclusions Patients exhibit strong awareness of the benefits of exercise in ACM, and many receive personalised guidance. However, variability in counselling clarity and follow-up highlights a significant room for improvement and an opportunity to strengthen care. Advancing structured, multidisciplinary exercise pathways may enhance long-term patient engagement and clinical outcomes.
Canu et al. (Mon,) conducted a cross-sectional in arrhythmogenic cardiomyopathy (n=194). Diagnosis of arrhythmogenic cardiomyopathy and exercise counselling vs. Pre-diagnosis status was evaluated on Exercise behaviour and adequacy of exercise counselling. Following a diagnosis of arrhythmogenic cardiomyopathy, patient participation in intense exercise decreased from 13.9% to 2%, though only 33% found their exercise counselling clear.