Effects of a personalized home-based training program among patients suffering from Marfan syndrome: a pilot randomized and controlled study

DOI Web Site 参考文献28件
  • Jouini Steeve
    Institute of Sport and Health Sciences of Paris, Université de Paris, Paris, France.
  • Milleron Olivier
    Laboratory for Vascular Translational Science, Hôpital Bichat-Claude-Bernard, Université de Paris, Paris, France. Centre national de référence pour le syndrome de Marfan et pathologies apparentés, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, Paris, France. Service de Cardiologie, Centre National de Référence Pour le Syndrome de Marfan et Apparentés, AP-HP, Hôpital Bichat, Paris, France.
  • Eliahou Ludivine
    Centre national de référence pour le syndrome de Marfan et pathologies apparentés, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, Paris, France. Service de Cardiologie, Centre National de Référence Pour le Syndrome de Marfan et Apparentés, AP-HP, Hôpital Bichat, Paris, France.
  • Jondeau Guillaume
    Laboratory for Vascular Translational Science, Hôpital Bichat-Claude-Bernard, Université de Paris, Paris, France. Centre national de référence pour le syndrome de Marfan et pathologies apparentés, Assistance Publique-Hôpitaux de Paris, Hôpital Bichat, Paris, France. Service de Cardiologie, Centre National de Référence Pour le Syndrome de Marfan et Apparentés, AP-HP, Hôpital Bichat, Paris, France.
  • Vitiello Damien
    Institute of Sport and Health Sciences of Paris, Université de Paris, Paris, France.

書誌事項

公開日
2021-11-30
DOI
  • 10.5582/irdr.2021.01080
公開者
特定非営利活動法人 バイオ＆ソーシャル・サイエンス推進国際研究交流会

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説明

<p>Marfan syndrome (MFS) is an autosomal hereditary pathology affecting 1:5000 peoples. Alteration of the fibrillin 1 gene (FBN1) results in haplo-insufficiency of the FBN1 protein mainly altering the vascular system. International recommendations have gradually allowed MFS patients to perform training programs because of its potential benefits. However, to date, there are no data on the effect of a long training period in these patients. The aim of the present study is to investigate the effect of a 3-month personalized home-based training on quality of life (QoL) of patients suffering from MFS. At least 50 MFS patients were included in the study. They were randomly placed into 4 groups: control group; endurance; resistance and endurance + resistance training groups. The training program lasted 3 months and is performed at patients' home. There were 2 training sessions per week telemonitored by a specialist of physical activity and cardiology. Pre and post-training evaluations were performed at the Bichat-Paris Hospital, France. They consisted of assessing psychometrics based on self-administered questionnaires (FiRST, GPAQ, ISP-25, MOS SF-36) and physiological parameters such as the peak oxygen consumption, aorta diameter, cardiac ventricle function and skeletal muscle power at rest and during exercise. Our preliminary results showed an improvement of 50% in QoL, cardiorespiratory fitness and skeletal muscle power in a patient who completed the combined training program. This experimental approach might be a new alternative way for MFS patients' care that may improve their QoL, cardiorespiratory fitness and skeletal muscle power. </p>

収録刊行物

  • Intractable & Rare Diseases Research

    Intractable & Rare Diseases Research 10 (4), 263-268, 2021-11-30

    特定非営利活動法人 バイオ＆ソーシャル・サイエンス推進国際研究交流会

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