Does timing of initiation influence acceptance and adherence to NIV in patients with ALS?

The role of nocturnal non invasive ventilation (NIV) to prolong tracheostomy-free survival, is still controversial in amyotrophic lateral sclerosis (ALS) patients and the best timing to initiate NIV is unclear.

As NIV acceptance and adherence can be influenced by many factors, we aimed to compare immediate acceptance and short-term NIV adherence between NIV initiated very early and NIV initiated later.

This is a post hoc analysis of our previous cohort retrospective study of 88 ALS patients: 53 under later NIV (late group - LG) (forced vital capacity [FVC]<80% pred. at NIV prescription) and 35 under very early NIV (very early group - VEG) (FVC>80%). We compared hours of NIV use as immediate acceptance of NIV (use ≥4h/night) and dherence at 4 months post-initiation (defined as use ≥4h/night or 120h/month).

No differences were found between VEG and LG in use of NIV (>5h/night in both groups), immediate acceptance (85.7% vs. 85.0%, p=0.927) and short-term adherence (81.3% vs. 87.2%, p=0.469); 39.7% of patients increased their NIV use (35% by >60min/night). A decline in adherence was observed in 12.5% of patients irrespective of group affiliation.

In ALS patients, initiation of very early NIV does not reduce its immediate acceptance or the short-term adherence. However, at least 1 in 10 patients may be at risk of reducing their adherence irrespective of early or late NIV prescription. As still under debate and not conclusive, further literature on early NIV benefit is welcomed.