Pulmonology Department, 59043Centro Hospitalar de Vila Nova de Gaia/Espinho, Vila Nova de Gaia, Portugal.
CINTESIS@RISE, MEDCIDS, 26705Faculty of Medicine of the University of Porto, Porto, Portugal.
Chron Respir Dis. 2022 Jan-Dec;19:14799731221137082. doi: 10.1177/14799731221137082.
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.
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.
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.
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.
患者的治疗体验是高质量医疗保健的基石之一，与临床安全性和有效性同等重要。我们旨在评估患者在门诊环境下接受家庭机械通气（HMV）随访的体验，并确定在门诊环境下开始 HMV 的患者与在其他环境下开始 HMV 的患者之间的差异。
这是一项横断面研究，纳入了在门诊通气诊所接受 HMV 的慢性呼吸衰竭患者。患者填写了一份患者体验问卷和 S3-NIV 问卷。
该研究纳入了 235 名患者（127 名，54%为男性），中位年龄 70 岁[25-75 百分位数 64-76]，其中约一半在门诊环境下适应了 HMV（117 名，49.8%）。患者每天使用呼吸机 8.0 小时[6.0-10.0]，使用呼吸机的中位时间为 35.0 个月[12.0-66.0]。患者对起始时的教育总体评价良好（209 名[88.9%]认为提供的信息足够），适应时间短[104 名（44.3%）在数小时后感觉适应]，并认为有获益（171 名[72.8%]报告呼吸急促减轻，158 名[67.2%]生活质量改善，150 名[63.8%]疲劳感减轻）。获益超过了治疗的副作用（158 名[67.2%]报告鼻腔干燥，109 名[46.4%]面罩压疮，96 名[40.9%]漏气）。在适应设置方面，报告的健康获益、副作用或适应时间方面无差异，但在门诊开始 HMV 的患者报告适应时的沟通和教育更好。
门诊环境被视为一种积极的体验，无论是在 HMV 起始还是随访阶段，良好的医患沟通带来了显著的健康报告获益、健康状况和幸福感的改善以及良好的治疗依从性。
