Abstract
BACKGROUND: The patient's experience of treatment is a cornerstone of high-quality healthcare, along with clinical safety and effectiveness. We aimed to evaluate the patients' perspectives regarding home mechanical ventilation (HMV) follow up in an outpatient setting and ascertain differences between patients that started HMV in the outpatient setting compared to other settings. METHODS: This cross-sectional study was conducted with patients with chronic respiratory failure under HMV in the Outpatient Ventilation Clinic. Patients filled in a patient experience questionnaire and the S3-NIV questionnaire. RESULTS: The study included 235 patients (127, 54% male), median 70 [25-75 percentiles 64-76] years) and about half were adapted to HMV in the outpatient setting (117, 49.8%). Patients had a daily ventilator usage of 8.0 [6.0-10.0] hours and have been on ventilator for a median of 35.0 [12.0-66.0] months. Patients reported an overall good experience regarding education at initiation (209 [88.9%] considered the information given was enough), short time to adaptation [104 (44.3%) felt adapted after some hours], with perceived benefits (171 [72.8%] reported less shortness of breath, 158 (67.2%) improved quality of life and 150 (63.8%) less tiredness). Benefits overcame the treatment side-effects (158 [67.2%] reported mucosal dryness, 109 (46.4%) mask sores and 96 (40.9%) leaks). There was no difference in terms of reported health gains, side effects or time to adaptation between adaptation settings, but patients starting HMV in the outpatient setting reported better communication and education at adaptation. CONCLUSIONS: Outpatient setting was perceived as a positive experience, both in HMV initiation and follow up, with good patient-physician communication leading to significant health reported gains, improvement of health status and well-being and good treatment adherence.