Shared decision-making for preventive sports cardiology in youth with heart disease: a pilot study

Many youth with heart disease remain inactive despite the recognized benefits of physical activity. Shared decision-making (SDM) between patients, families, and care teams has been proposed to support exercise guidance, but implementation models are scarce. This pilot study evaluated the feasibility, acceptability, and safety of the Young Heart and Sport Clinic, an SDM-based preventive sports cardiology consultation.

A prospective, single-center study enrolled participants (6-25 years) with heart disease. The consultation comprised: well-being assessment (patient-reported outcomes); sports cardiology evaluation (cardiopulmonary exercise test, electrocardiogram, echocardiography, spirometry, muscle strength testing, accelerometry); and multidisciplinary consultation (pediatric sports cardiologist, specialist nurse, adapted physical activity educator). The team reviewed findings and used a semi-structured interview to identify barriers, motivators, and goals for tailored exercise prescriptions. Post-consultation orientation included cardiac rehabilitation, community-based activity, or referral to other specialists.

Of 35 referred patients, 34 completed the program. Families and cardiologists endorsed its relevance and feasibility. No exercise-related adverse events were reported. At 6-month, 82% adhered to recommendations; 53% engaged in community-based activity, 44% in cardiac rehabilitation.

This pilot study supports the feasibility, safety, and acceptability of an SDM-based model integrating exercise guidance. This approach may help bridge gaps between adult guidelines and pediatric practice.

A multidisciplinary, shared decision-making-based sports cardiology consultation is feasible, acceptable, and safe for youth with heart disease. This study introduces a pragmatic framework that adapts adult preventive cardiology guidelines to pediatric practice, addressing a major gap in structured exercise counseling and rehabilitation pathways for this population. Implementation of this model may improve physical activity adherence, long-term cardiovascular prevention, and quality of life in children and young adults living with heart disease.