Tele-medicine experiences and expectations from patients with neuromuscular diseases treated with non-invasive ventilation - 06/02/25
Doi : 10.1016/j.resmer.2025.101160
Sandrine Segovia-Kueny c, 1, Mathieu Delorme c, e, f, 1, Caroline Stalens c, Julie Lejeune c, Frédéric Lofaso a, d, Hélène Prigent a, b, Antoine Leotard a, b, ⁎ 
a Service de Physiologie et d'Explorations Fonctionnelles, AP-HP, GHU Paris Saclay, Hôpital Raymond Poincaré, Garches, France
b U1179 Inserm, UVSQ-Université Paris-Saclay, 78000, Versailles, France
c AFM-Téléthon, Direction des Actions Médicales, 91000, Evry, France
d Université Paris-Saclay, UVSQ, ERPHAN, 78000 Versailles, France
e Centre de Recherche Cardio-thoracique de Bordeaux, Université de Bordeaux, Bordeaux, France
f INSERM, U1045, Pessac, France
#Corresponding author.
Highlights |
• | Tele-medicine may improve NIV initiation and follow-up in patients with NMD. |
• | 90.5 % of patients who already experimented tele-consultations were satisfied with this experience. |
• | 61 % of patients reporting being subject to tele-monitoring of NIV data considered it satisfactory. |
• | Approximately one-third-of patients claimed being reluctant to use tele-consultations and tele-monitoring. |
• | Neither age, lifestyle, mobility autonomy, frequency of respiratory follow-up, experience with digital tools, nor clinical severity indicators were significantly associated with being in favour or against tele-medicine tools. |
Keywords : Neuromuscular diseases, Chronic respiratory failure, Non-invasive ventilation, Tele-medicine, Tele-monitoring
Abbreviations : BMI, HCP, IQR, NIV, NMD, TC, TM
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Vol 87
Articolo 101160- maggio 2025 Ritorno al numero
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