Neuromuscular diseases are frequently associated with respiratory failure, which requires Non Invasive Ventilation (NIV). Currently, the NIV installation is done during an hospitalization of several days. This hospitalization is problematic because of availability of beds, logistical difficulties for the patient and estrangement from the usual environment. For this reasons, the NIV installation at home could be an interesting alternative for both the patient and the medical staff. The aim of this pilot study is to test the feasibility of NIV installation at home, using telemedicine as a remote monitoring tool, and to assess its impact on the ventilation compliance.
For the study protocol, patients will be hospitalized for the first day to define the ventilation mode and initial parameters, and to choose the best adapted interface. Then, the patient is discharged from hospital and parameters adaptation is continued at home during the following five days by the hospital medical staff, using telemedicine. An ASV Santé employee visits the patient at home everyday during 5 days to ensure follow-up.
Study Type
INTERVENTIONAL
Allocation
NA
Purpose
TREATMENT
Masking
NONE
Enrollment
20
Hôpital Raymond Poincaré
Garches, France
RECRUITINGNumber of required days to obtain a 4-hours-night ventilation
Time frame: 5 days
Number of ventilation hours per 24 hours during the 5 first days
Time frame: 5 days
Capno-oximetry improvement at D5
Time frame: 5 days
Capno-oximetry and arterial blood gases improvement at D30
Time frame: 30 days
Clinical signs decrease (symptoms, dyspnea, drowsiness)
Time frame: 30 days
Number of non programmed home visits
Time frame: 5 days
Economic cost evaluation
Time frame: 5 days
Number of skin slough caused by interface position
Time frame: 30 days
Number of hospitalization for respiratory or ventilation disorder
Time frame: 30 days
Satisfaction scale for the patient and his family at D5 and D30
CSQ8 and VAS (Visual Analogical Scale)
Time frame: 30 days
Quality of life (SF36) at D1 and D30
Time frame: 30 days
Reliability of telemonitoring
Cross between ventilation parameters read remotely and ventilation parameters audited at patient home (by an ASV Santé employee)
Time frame: 5 days
Reliability of telemedicine
Cross between ventilation parameters modified remotely and ventilation parameters audited at patient home (by an ASV Santé employee)
Time frame: 5 days
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