Background: Long-term non-invasive ventilation (LT-NIV) reduces hypercapnia and exacerbations but may also improve patient?s health-related quality of life, e.g.respiratory symptoms, sleep quality and side effects. The 11-item Symptoms, Sleep quality and NIV-related Side-effects (S3-NIV) questionnaire for patients treated with LT-NIV, was recently translated from English to Danish. The 11 items are scored on a 0?4-point Likert-scale. The lowest possible score (0) corresponds to the highest impact on disease and treatment.
Aim: To validate the use of the S3-NIV in Danish and evaluate patients' symptom burden i.e. symptoms, sleep quality and side effects.
Methods: A real-life study evaluating patients? experience in a home setting including both patients treated with LT-NIV < one month (group 1) and > one month (group 2). Patients answered the S3-NIV after two weeks (phone call), and after one month (home visit). A qualified nurse supervised patients prior to response but did not guide the patients further.
Results: To date, 24 patients have been included in the study: Group 1 (n= 10) and group 2 (n=14). The average total score from the 24 patients was mean 5.98 +/- 1.25 at two weeks, and 6.52 +/-1.02 at four weeks. This was comparable with the COPD cohort of the original S3-NIV publication (mean 6.09 +/- 1.58). Questions related to breathlessness and dryness were evaluated with the lowest scores and thus with the highest impact of symptoms and side effects
Conclusion: The Danish S3-NIV was valid compared to English results. Perceived symptoms ameliorated over time, but S3-NIV highlighted breathlessness and dryness as burdensome to patients.