Abstract

Introduction: Knowledge about long-term outcome in patients using home mechanical ventilation (HMV) is important to optimize shared decision making and advanced care planning. This study is aimed to assess the 1-year overall mortality and to identify its predictors in patients starting with HMV. Methods: Patients who started HMV in our centre between January 1, 2012–December 31, 2017 were included. Data on demographics, diagnosis, blood gasses and lung function were assessed as well as the Severe Respiratory Insufficiency (SRI) questionnaire and Care Dependency Scale (CDS). Univariate and multivariate logistic regression were used for statistical analysis. Results: The 1-year overall mortality in 812 adults (mean age 63 years [range 53-70]) was 20%. Classified by disease category, the mortality was respectively 48%, 21%, 10%, 8% and 7% in rapidly progressive neuromuscular disease (NMD), end-stage lung diseases/Chronic Obstructive Pulmonary Disease (ELD/COPD), slowly progressive NMD and thoracic deformities, myotonic dystrophy type 1 and sleep disorders. Independent predictors for mortality were: age (odds ratio (OR) 1.033 [confidential interval (CI)] 1.014-1.053), diagnosis category (OR 3.433 [CI] 2.207-5.339), base excess (BE)>4 (OR 0.599 [CI] 0.370-0.970), peak expiratory flow (PEF) (OR 0.998 [CI] 0.996-1.000), CDS (OR 0.968 [CI] 0.945-0.992), SRI total (OR 1.162 [CI] 1.033-1.307), SRI respiratory complaints (RC) (OR 0.951 [CI] 0.915-0.989), SRI mental well-being (WB) (OR 0.955 [CI] 0.922-0.990). Method: The 1-year overall mortality in patients starting HMV is 20% and the highest in rapidly progressive NMD and in ELD/COPD. Survival was strongly related to age, diagnosis, BE>4, PEF, CDS, SRI-total, SRI-RC, SRI-WB.

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