Advancing inclusive development through community-based rehabilitation: a systematic literature review.

Prior expert consensus, including the 2014 European Society of Cardiology (ESC) Guidelines on Hypertrophic Cardiomyopathy and the 2015 American Heart Association/American College of Cardiology (AHA/ACC) Task Force 3 recommendations, generally restricted children with hypertrophic cardiomyopathy (HCM) from participation in competitive sports and many forms of recreational physical activity. These recommendations were derived largely from adult observational studies, autopsy registries, and expert opinion rather than pediatric-specific data. However, data suggests that the risk of exertional related cardiac events is likely not as high as once believed, and that restriction is associated with negative cardiovascular and mental health consequences. Although much of the evidence supporting this evolution in orientation originates from adult and mixed-age cohorts, several studies including children (LIVE-HCM) and pediatric-focused expert statements (2026 AHA scientific statement) have reinforced the importance of individualized risk assessment and shared decision-making (SDM) rather than universal restriction. Accordingly, balancing the risks and benefits of physical activity should incorporate both patient-specific risk factors and the physical demands of the desired activity while recognizing the limitations of the currently available pediatric evidence. Hypertrophic cardiomyopathy (HCM) is the most common inherited cardiomyopathy in children, accounting for 35–50% of cases and is characterized by the presence of ventricular hypertrophy that cannot be attributed to abnormal loading conditions (such as systemic hypertension or congenital aortic stenosis) or secondary causes including infiltrative, metabolic, syndromic, endocrine, or neuromuscular disorders []. In children, the diagnosis is most often made with cardiac imaging, with echo and/or cardiac MRI demonstrating abnormal ventricular wall-thickness, frequently including asymmetric thickening of the ventricular septum. Traditional guidance for exercise in patients with HCM featured restriction [, ], due to concerns that athletic participation could precipitate sudden cardiac death (SCD) through either catecholamine surge triggering ventricular arrhythmia or dynamic left ventricular outflow tract (LVOT) obstruction leading to inadequate coronary perfusion. There was also concern that regular physical activity (PA) could worsen disease progression by accelerating pathologic hypertrophy. However, many of these expert recommendations were based on autopsy studies, which likely overestimated the risk of exercise in HCM patients []. More recent data has demonstrated that the relationship between HCM and exercise is likely more complicated than previously believed. In a pediatric and young adult cohort, HCM-related mortality has been estimated at 0.5% per year []. A pediatric-specific cohort demonstrates cumulative risk of SCD events were: 2.8% at 1 year, 9.1% at 5 years, and 15.0% at 10 years []. Furthermore, contemporary studies have not demonstrated an independent association between vigorous exercise and major arrhythmic events [–] and preliminary data suggests that exercise may in fact lead to positive cardiac remodeling and improved diastolic performance. There is also accumulating evidence that exercise restriction has a negative effect on emotional and cardiovascular health in children with HCM []. This has led to a shift in expert recommendations for patients with HCM [–], that emphasizes individualized risk assessment and shared decision making (SDM). This progression is particularly relevant in children given the importance of physical activity during childhood. This review will review the recent data on exercise in HCM and focus on how physical activity related recommendations in HCM are evolving, with an emphasis on shared decision-making (SDM).