Aims: To examine changes and explanatory variables for changes in health-related quality of life in patients treated with long-term mechanical ventilation over a 6-year period.Background: Long-term mechanical ventilation is a treatment for individuals with

The aims of this study were to translate and adapt the Severe Respiratory Insufficiency (SRI) questionnaire into Norwegians and to test its reliability and validity.Data were collected from a cross-sectional survey and were linked to the Norwegian Registry of patients receiving long-term mechanical ventilation (LTMV). Of 193 potential participants, 127 responded to the SRI questionnaire. Reliability as measured with Cronbach's α varied between 0.68 and 0.88 for the subscales and was 0.94 for SRI-sum score. Construct validity was obtained with high correlations between subscales in SF-36 and SRI. The SRI questionnaire discriminated well between universally accepted clinical differences among categories of patients receiving LTMV by significant dissimilarities in SRI-sum score and SRI subscales. The Norwegian version of SRI has well-documented psychometric properties regarding reliability and validity. It might be used in clinical practice and in international studies for assessing health-related quality of life in patients receiving LTMV.

BackgroundThe Severe Respiratory Insufficiency (SRI) questionnaire is a specific measure of health-related quality of life (HRQoL) in patients treated with long-term mechanical ventilation (LTMV). The aim of the present study was to examine whether SRI sum scores and related subscales are associated with mortality in LTMV patients.MethodsThe study included 112 LTMV patients (non-invasive and invasive) from the Norwegian LTMV registry in Western Norway from 2008 with follow-up in August 2014. SRI data were obtained through a postal questionnaire, whereas mortality data were obtained from the Norwegian Cause of Death Registry. The SRI questionnaire contains 49 items and seven subscales added into a summary score (range 0–100) with higher scores indicating a better HRQoL. The association between the SRI score and mortality was estimated as hazard ratios (HRs) with 95% confidence intervals (95% CI) using Cox regression models and HRs were estimated per one unit change in the SRI score.ResultsOf the 112 participating patients in 2008, 52 (46%) had died by August 2014. The mortality rate was the highest in patients with chronic obstructive pulmonary disease (75%), followed by patients with neuromuscular disease (46%), obesity hypoventilation syndrome (31%) and chest wall disease (25%) (p < 0.001). Higher SRI sum scores in 2008 were associated with a lower mortality risk after adjustment for age, education, hours a day on LTMV, time since initiation of LTMV, disease category and comorbidity (HR 0.98, 95% CI: 0.96–0.99). In addition, SRI-Physical Functioning (HR 0.98, 95% CI: 0.96–0.99), SRI-Psychological Well-Being (HR 0.98, 95% CI: 0.97–0.99), and SRI-Social Functioning (HR 0.98, 95% CI: 0.97–0.99) remained significant risk factors for mortality after covariate adjustment. In the subgroup analyses of patient with neuromuscular diseases we found significant inverse associations between some of the SRI subscales and mortality.ConclusionsSRI score is associated with mortality in LTMV-treated patients. We propose the use of SRI in the daily clinic with repeated measurements as part of individual follow-up. Randomized clinical trials with interventions aimed to improve HRQoL in LTMV patients should consider the SRI questionnaire as the standard HRQoL measurement.Electronic supplementary materialThe online version of this article (10.1186/s12890-018-0768-4) contains supplementary material, which is available to authorized users.