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

Abstract Background Despite growing recognition of the benefits of physical activity in paediatric cardiology, many youths with chronic cardiac conditions remain insufficiently active. Shared decision-making (SDM) between patients, families, and care teams has been proposed to support personalized exercise guidance, but practical 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 for children and young adults with heart disease. Methods A prospective, single-centre study (2024–2025) enrolled participants aged 6-25 years with chronic heart disease. The consultation comprised: (1) a well-being assessment using patient-reported outcomes; (2) a sports cardiology evaluation, including cardiopulmonary exercise test, electrocardiogram, echocardiography, spirometry, muscle strength testing, and accelerometry; and (3) a multidisciplinary SDM consultation involving a paediatric sports cardiologist, a specialist nurse, and an adapted physical activity (APA) educator. This team jointly reviewed all findings and conducted a semi-structured interview to identify barriers, motivators, and goals, informing individualized exercise prescriptions. Post-consultation orientation included cardiac rehabilitation, community-based activity, or referral to other specialists. Results Of 35 referred patients, 34 completed the program. Families and referring cardiologists endorsed its relevance and feasibility. No exercise-related adverse events were reported. At 6-month follow-up, 85% adhered to recommendations; 53% engaged in community-based activity, and 44% in cardiac rehabilitation. Conclusion This pilot study supports the feasibility, safety, and acceptability of a multidisciplinary, SDM-based model integrating preventive exercise guidance into paediatric cardiology care. This approach may help bridge gaps between adult guidelines and paediatric practice.The QUALIREHAB patient pathwayFor image description, please refer to the figure legend and surrounding text. Young and heart sport clinicFor image description, please refer to the figure legend and surrounding text.