King's College London

Background and objective: Home mechanical ventilation (HMV) is used in heterogeneous conditions underlying chronic hypercapnic respiratory failure, but there are sparse data on long-term clinical outcomes. The aim was to systematically analyse the time and the circumstances of death on HMV. Methods: All-cause mortality data of HMV patients were prospectively collected between 2008 and 2018 in a large tertiary centre. Data were categorised into diagnostic groups including neuromuscular disease (NMD), chest wall disease (CWD), chronic obstructive pulmonary disease (COPD), obesity hypoventilation syndrome (OHS), overlap syndrome of COPD and OSA (overlap) and other group. The primary outcome was time-to-death from initiation of HMV. Results: 1210 deaths were recorded over a 10-year period. Median time-to-death was 19.5 [6–55] months and differed between groups (Kruskal Wallis p < 0.001). CWD (98.5 [23.5–120] months) and slowly progressive NMD (64.5 [28–120] months) had the longest time-to-death on HMV, while OHS (33 [13–75] months) and overlap syndrome (30.5 [14.5–68.5] months) had a longer median time-to-death than COPD (19.5 [7–42.5] months) and motor neurone disease (7 [3–14] months). Daily adherence to HMV of greater than 4 h/night was associated with better outcomes (10 [3–24] vs. 30 [10–76] months; p < 0.001). 43% with confirmed location of death died outside the hospital. Conclusions: The time-to-death on home mechanical ventilation varies widely across disease groups with chronic respiratory failure and seems to be associated with daily usage time. Trial registration: researchregistry.com UIN: researchregistry4122.