Online Personal Training in Patients With Marfan Syndrome: A Randomized Controlled Study of Its Impact on Quality of Life and Physical Capacity

Abstract

Background Marfan syndrome (MFS) is a genetic disorder affecting the vascular and musculoskeletal systems. Limited knowledge exists regarding the exercise benefits for this population. This study aimed to explore the impact of a structured exercise program on the quality of life (QoL) and physical capabilities of patients with MFS. Methods and Results This was a randomized, controlled, parallel‐group trial. Patients with MFS were randomized in a 1:1 ratio to either a training group or a control group. The trial included a 3‐month online supervised training program. Seventy patients with MFS were compared with healthy subjects. They were randomized into a training group (MFS‐T) and a control group (MFS‐C). The training consisted of 2 supervised online sessions weekly for 3 months. The primary outcome was QoL, assessed using the Medical Outcomes Study Short‐Form 36 questionnaire. Baseline QoL in all dimensions was lower in patients with MFS. Their peak oxygen uptake was 25% lower, and muscle elasticity was diminished compared with healthy subjects. Postintervention, significant improvements were observed in the MFS‐T group relative to the MFS‐C group: QoL (+20.2±14.3 versus +0.7±0.5), peak oxygen uptake (+34% versus +14%), muscle elasticity index (11.5±8.2 versus +1.2±1.7), reduced blood pressures during isometric squats (systolic −19±30 versus 0±6; diastolic −27±39 versus +2±15), and reduced pulse wave velocity at rest (−1.20±1.89 versus −0.40±1.61) and postexercise (−0.42±0.45 versus +0.08±0.48). The aortic diameter remained stable in both groups (MFS‐T−0.19±1.1 versus MFS‐C+0.11±0.78). After training, QoL remained lower in MFS‐T than in healthy subjects, but peak oxygen uptake, pulse wave velocity at rest, and postexercise were similar to those of healthy subjects. Conclusions The 3‐month online training program significantly enhanced QoL and cardiovascular/muscular metrics in patients with MFS without affecting aortic root diameter, suggesting its potential as part of a management strategy for MFS. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04553094.

Keywords

• e‐rehabilitation
• exercise
• Marfan syndrome
• personalized training