Experienced benefits and side effects affect adherence with long-term noninvasive ventilation

Long-term noninvasive ventilation (LT-NIV) is widely used in different diseases causing hypoventilation. We studied factors associated with adherence to LT-NIV in two hospitals in two different countries.

This was a retrospective study including patients with chronic obstructive pulmonary disease (COPD), obesity-hypoventilation syndrome (OHS) and amyotrophic lateral sclerosis (ALS) initiating LT-NIV from January 1, 2012, to December 31, 2015, in Finland and from January 1, 2015, to December 31, 2022, in the Netherlands and followed up for two years.

A total of 702 patients were included: 334 patients with COPD, 158 patients with OHS and 210 patients with ALS. Six months after initiation, 78 %, 67 % and 87 % of the patients with COPD, OHS and ALS used their ventilator ≥5 h/day, respectively. Adherent COPD and ALS patients had higher ventilatory settings compared to non-adherent patients. In OHS, female patients were more often adherent. In a multivariate model, only experienced NIV benefits, side effects and the hospital where the patient was treated were associated with better adherence to NIV. The 2-year survival was best in COPD and OHS patients (median not calculated as less than 50 % died) and worst in ALS patients being 0.9 y (IQR 0.4-1.8 y). Further, survival did not differ between adherent and non-adherent COPD, OHS and ALS patients.

Experienced benefits and less side effects were associated with better NIV adherence. Adherence did not affect short-time survival in patients with COPD, OHS and ALS. To improve adherence, we suggest careful follow-up from the beginning to optimize ventilation.