Amyotrophic lateral sclerosis: adherence in 1 and 3 months after mechanical ventilation initiation

Noninvasive mechanical ventilation (NIMV) can improve survival and quality of life of amyotrophic lateral sclerosis(ALS) patients, which is a motor neuron disease potentially life threatening when affects the respiratory system. There are several factors to consider before starting NIMV, like technical aspects (respiratory function, symptoms), but also cultural or socioeconomic conditions. A restrospective study was conducted between 2021 and 2023, in a follow-up of all ALS patients evaluated in this period. We compared the adherence and overnight oximetry after the first and the third month NIMV initiation. Data were obtained from 69 patients. 95,7% initiated NIMV in an out-patient setting. At 1 month after NIMV initiation, average daily use was 5,65h/d and categorical adherence (threshold of >4h/d) was 59,6%. At 3 months, both categories improved (8,62h and 74,2%, respectively). There was also an improvement of overnight oximetry after 3 months (Figure 1). 3 of the patients suspended MV, because of intolerance. ALS is a complex disease, and the course is very variable. Adherence among these patients appeared to improve over time, however it is important to report both average daily use data and categorical adherence rates. Nonadherence was observed, including in patients with advance disease. It is crucial to identify factors that can be addressed to improve adherence and maximize the effect of MV.