Sheers Nicole L, Hannan Liam M, Rautela Linda, Graco Marnie, Jones Jennifer, Retica Sarah, Saravanan Krisha, Burgess Nicola, McGaw Rebekah, Donovan Ashleigh, Clohessy Talia, Chao Caroline, Charles Cameron, Howard Mark E, Berlowitz David J
Department of Respiratory and Sleep Medicine, Austin Health, Heidelberg, Australia.
Institute for Breathing and Sleep, Heidelberg, Australia.
Amyotroph Lateral Scler Frontotemporal Degener. 2025 May;26(3-4):239-248. doi: 10.1080/21678421.2024.2416668. Epub 2024 Oct 21.
: Noninvasive ventilation (NIV) is the primary treatment for respiratory insufficiency in neuromuscular disease. NIV implementation is usually conducted within hospitals; however, in-home implementation with intensive follow-up is an effective alternative. This pilot study aimed to assess model feasibility, acceptability, and NIV usage at 12-weeks after a single visit in-home implementation of NIV with remote monitoring follow-up (NIV@Home) compared to an in-hospital day admission NIV initiation plus planned polysomnography (Usual care). : A single-blinded randomized controlled trial (www.anzctr.org.au ACTRN12620000682943) of adults with neuromuscular disease referred for NIV implementation. Participants were stratified by disease (MND or Other diagnoses) and bulbar symptoms before randomization to NIV@Home or Usual care, with follow-up at 12-weeks. The primary outcome was NIV usage. Secondary outcomes included feasibility, health-related quality of life, symptoms, carer burden, and NIV experience (semi-structured qualitative interviews). : Twenty-three participants (MND bulbar = 9, MND non-bulbar = 11, Other = 3) were randomized (NIV@Home = 9). No statistical differences were observed in the percentage of MND participants using NIV for >4 hours/day (NIV@Home = 33% vs. Usual care = 60%, = 0.370), average use (NIV@Home = 2.4 [1.5-9.3] vs. 5.3 [1.8-7.0] hours/day, = 0.568), or secondary outcomes. In-home NIV implementation was feasible and safe but took more therapist time (NIV@Home = 278 [270-305] vs. 172 [130-200] minutes, < 0.001). Participants in the NIV@Home group reported substantial advantages to receiving care in home. : In-home NIV implementation is feasible and acceptable to people with MND but requires more therapist time. Larger studies are required to determine whether there are clinically important differences between this model of NIV initiation and a traditional hospital-based model.
无创通气（NIV）是治疗神经肌肉疾病呼吸功能不全的主要方法。NIV通常在医院内实施；然而，在家中实施并进行强化随访是一种有效的替代方案。这项前瞻性研究旨在评估与医院日间入院NIV起始加计划多导睡眠监测（常规护理）相比，单次上门实施NIV并进行远程监测随访（家庭NIV）12周后的模式可行性、可接受性及NIV使用情况。
一项针对因需实施NIV而转诊的神经肌肉疾病成人患者的单盲随机对照试验（www.anzctr.org.au ACTRN12620000682943）。在随机分组至家庭NIV或常规护理组之前，参与者按疾病（运动神经元病或其他诊断）和延髓症状进行分层，并随访12周。主要结局是NIV使用情况。次要结局包括可行性、健康相关生活质量、症状、照顾者负担及NIV体验（半结构化定性访谈）。
随机分组23名参与者（运动神经元病延髓型=9名，运动神经元病非延髓型=11名，其他=3名）（家庭NIV=9名）。运动神经元病患者中，每天使用NIV超过4小时的百分比（家庭NIV=33% vs.常规护理=60%，P=0.370）、平均使用时间（家庭NIV=2.4[1.5 - 9.3] vs. 5.3[1.8 - 7.0]小时/天，P=0.568）或次要结局方面未观察到统计学差异。在家中实施NIV可行且安全，但需要治疗师花费更多时间（家庭NIV=278[270 - 305] vs. 172[130 - 200]分钟，P<0.001）。家庭NIV组参与者报告在家中接受护理有诸多显著优势。
在家中实施NIV对运动神经元病患者可行且可接受，但需要治疗师花费更多时间。需要开展更大规模研究以确定这种NIV起始模式与传统医院模式之间是否存在临床重要差异。
