satisfaction of patients with amyotrophic lateral sclerosis regarding home assisted teleconsultation

Conditions: ALS; Charcot Disease

Summary: satisfaction of patients with amyotrophic lateral sclerosis under non-invasive ventilation regarding home assisted teleconsultation

amyotrophic lateral sclerosis (als) is a progressive and rapidly progressing neurodegenerative disease. depending on the degree of muscle damage, patients may suffer from reduced mobility, difficulty swallowing, speech difficulties and finally respiratory weakness. death occurs within an average of 2-3 years and is usually due to respiratory failure. currently there is no cure for als, so palliative care and symptomatic treatments are essential for the management of these patients. the gold standard treatment for respiratory impairment is non-invasive ventilation (niv). the aim of this mask ventilation is to improve gas exchange by compensating for the weakness of the respiratory muscles. the progressive nature of als requires regular assessment of the patient's clinical condition and evaluation of niv parameters. regular medical appointments are therefore essential to ensure optimal ventilation and close surveillance of the patient. a day hospitalization or a consultation is organized every 3 or 4 months. these visits can cause significant fatigue, not only because of the difficulty patients have to move around but also because of the time spent waiting in hospital. als is characterised by its severity and it requires our society to think about and implement new ways of managing the disease. thus, e-health innovations could be an interesting potential in the remote follow-up of these patients, to reduce the burden of hospital consultations. the hypothesis is that the patient will be more satisfied with a home assisted teleconsultation follow-up, while keeping the same quality of non-invasive nocturnal ventilatory assistance.

Eligibility criteria:
inclusion criteria: * patient with a diagnosis of als coming for a follow-up consultation with their pneumologist * daily niv compliance of more than 4 hours in the month prior to inclusion * living at home * patient with a natural caregiver * patient equipped with computer equipment adapted for teleconsultation (tablet, computer, telephone... with an internet connection) * patient able to read and understand the procedure, and able to express consent for the study protocol * patient, or his or her caregiver, able to sign the consent to participate by himself or herself exclusion criteria: * patient not available or wishing to change region within 3 months of inclusion * patient currently participating or having participated in the month prior to inclusion in another clinical interventional research study that may have an impact on the study, this impact is left to the discretion of the investigator * persons referred to in articles l1121-5 to l1121-8 of the french public health code (corresponding to all protected persons) * pregnant women (for women of childbearing age and in the absence of reliable contraception, the β-hcg (human chorionic gonadotropin) assay will be performed), parturient women, breastfeeding women, * persons deprived of their liberty by judicial or administrative decision, * persons under legal protection