Intensive physical training in children with heritable connective tissue disorders is feasible and safe: a pilot study

PurposeThis pilot study assessed the feasibility, safety, and acceptability of a physical training program combined with parental meetings for children with heritable connective tissue disorders (HCTD), including Marfan syndrome (MFS), Loeys-Dietz syndrome (LDS), and Ehlers-Danlos syndromes (EDS). Secondary, it aimed to explore preliminary observations regarding the program's impact on individual training goals and physical fitness, including aerobic and anaerobic capacity, strength, agility, pain, fatigue, and disability.Materials and methodsThe intervention comprised functional power training (FPT) and high-intensity interval training (HIIT) conducted three times a week over 12 weeks. Data on feasibility, safety, and acceptability were collected, along with preliminary observations on physical fitness performance.ResultsThe intervention was feasible and safe, with no serious adverse events reported. However, acceptability was limited, with a participation rate of 27.8%. Preliminary findings revealed that 80% of participants achieved their training goals, 75% improved their aerobic capacity, and 70% showed gains in strength and agility, alongside reported reductions in pain and fatigue.ConclusionThis study highlights the potential benefits of tailored physical training for children with HCTD. Despite acceptability challenges, the intervention demonstrated feasibility and safety, providing a foundation for larger-scale effectiveness studies that include systematic feedback mechanisms to enhance participant engagement.