Telemedicine system for the care of patients with neuromuscular disease and chronic respiratory failure

Abstract

Introduction: Neuromuscular diseases cause a number of limitations which may be improved by using a telemedicine system. These include functional impairment and dependence associated with muscle weakness, the insidious development of respiratory failure and episodes of exacerbation. Material and methods: The present study involved three patients with severe neuromuscular disease, chronic respiratory failure and long-term mechanical ventilation, who were followed up using a telemedicine platform. The telemedicine system is based on videoconferencing and telemonitoring of cardiorespiratory variables (oxygen saturation, heart rate, blood pressure and electrocardiogram). Two different protocols were followed depending on whether the patient condition was stable or unstable. Results: Over a period of 5 years, we analyzed a series of variables including use of the system, patient satisfaction and clinical impact. Overall we performed 290 videoconference sessions, 269 short monitoring oximetry measurements and 110 blood pressure measurements. With respect to the clinical impact, after enrolment in the telemedicine program, the total number of hospital admissions fell from 18 to 3. Conclusions: Our findings indicate that the system was user friendly for patients and care givers. Patient satisfaction scores were acceptable. The telemedicine system was effective for the home treatment of three patients with severe neuromuscular diseases and reduced the need for hospital admissions.