Long-term health-related quality of life in patients on home mechanical ventilation

BACKGROUND: It is fundamental to optimize and retain health-related quality of life (HRQoL) in the long term in patients with home mechanical ventilation (HMV). Therefore, this study aimed to evaluate the evolution of the HRQoL in patients already established on HMV across a period of 5 years and whether the HRQoL is associated with mortality. METHODS: This was a 5-year longitudinal cohort study conducted in an Outpatient Ventilation Clinic. Consecutive patients on HMV for at least 30 days responded to the Severe Respiratory Insufficiency (SRI) questionnaire at inclusion and again at 5 years. RESULTS: A total of 104 patients were included (male 56.7%, median age 69 [P25;P75] [61;77] years). Almost half of the patients had COPD (49.0%). Patients were on HMV for a median of 43.5 [22;85.5] months, with overall good adherence (median 8 [6;9] daily hours). Fifty-seven (54.8%) patients were alive at 5 years. In surviving patients, the only difference with statistical significance was in the attendant symptoms and sleep subscale, with patients scoring 7.1 [-4.5;25] points higher in the final questionnaire (p = 0.002). Survivors had significantly better scores in the SRI at inclusion than deceased patients (median 59.6 [49.2;71.7] vs 48.7 [38.4;63.2]; p = 0.004). CONCLUSIONS: These results shows that HRQoL remains stable in surviving patients with HMV at five years. It also suggests that SRI can be of important prognostic value and help predict the terminal phase of the disease course in patients with long-term HMV. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12890-022-02236-z.