Markström Agneta, Sundell Kerstin, Lysdahl Michael, Andersson Gillis, Schedin Ulla, Klang Birgitta
Department of Anesthesiology, Karolinska Institute Danderyd Hospital, Stockholm, Sweden.
Chest. 2002 Nov;122(5):1695-700. doi: 10.1378/chest.122.5.1695.
Home mechanical ventilation (HMV) is known to be a successful therapy for chronic respiratory insufficiency, with regard to long-term survival. However, the quality of life (QoL) of patients receiving HMV has not previously been systematically investigated. The purpose of this study was to assess the QoL of patients with neuromuscular disorders and skeletal deformities (ie, restrictive lung disease) receiving HMV.
Patients receiving HMV treated by tracheostomy or noninvasive ventilation (NIV). Three different, standardized, and validated questionnaires were used: the Sickness Impact Profile (SIP), the Health Index (HI), and the Sense of Coherence (SOC) scale. Underlying diseases were postpolio dysfunction (37%), neuromuscular disorder (20%), scoliosis (15%), and other diseases (28%).
The group treated with tracheostomy had higher HI scores than the group treated with NIV. For the three main diagnosis groups treated with tracheostomy or NIV, the patients with postpolio dysfunction treated with tracheostomy had lower SIP scores than the patients with postpolio dysfunction treated with NIV. This was in contrast to the patients with neuromuscular disorders treated with tracheostomy, who had higher scores in the SIP, compared with patients with postpolio dysfunction treated with tracheostomy and patients with neuromuscular disorders treated with NIV. A SIP score > 10% indicates a functional disability of clinical importance, and a high score on the HI and SOC scale indicates good perceived health. For the three main diagnosis groups treated with NIV, the patients with scoliosis had no dysfunction of clinical importance (4.6 +/- 3.7) on the SIP score compared with patients with postpolio dysfunction (15.5 +/- 7.6) and patients with neuromuscular disorders (13.2 +/- 5.2) [mean +/- SD]. The men showed more dysfunction in the SIP score than the women.
Patients receiving HMV reported a good perceived health, despite severe physical limitations. The patients with postpolio dysfunction and the patients with scoliosis treated with tracheostomy perceived the best health, compared with NIV for this diagnosis.
就长期生存而言，家庭机械通气（HMV）是治疗慢性呼吸功能不全的一种成功疗法。然而，此前尚未对接受HMV治疗的患者的生活质量（QoL）进行系统研究。本研究的目的是评估接受HMV治疗的神经肌肉疾病和骨骼畸形（即限制性肺病）患者的生活质量。
接受通过气管切开术或无创通气（NIV）治疗的HMV患者。使用了三种不同的、标准化且经过验证的问卷：疾病影响量表（SIP）、健康指数（HI）和连贯感（SOC）量表。基础疾病包括小儿麻痹后遗症功能障碍（37%）、神经肌肉疾病（20%）、脊柱侧弯（15%）和其他疾病（28%）。
气管切开术治疗组的HI评分高于NIV治疗组。对于接受气管切开术或NIV治疗的三个主要诊断组，气管切开术治疗的小儿麻痹后遗症功能障碍患者的SIP评分低于NIV治疗的小儿麻痹后遗症功能障碍患者。这与气管切开术治疗的神经肌肉疾病患者形成对比，与气管切开术治疗的小儿麻痹后遗症功能障碍患者和NIV治疗的神经肌肉疾病患者相比，他们的SIP评分更高。SIP评分>10%表明存在具有临床意义的功能障碍，HI和SOC量表得分高表明自我感觉健康良好。对于接受NIV治疗的三个主要诊断组，脊柱侧弯患者的SIP评分（4.6±3.7）与小儿麻痹后遗症功能障碍患者（15.5±7.6）和神经肌肉疾病患者（13.2±5.2）相比，无具有临床意义的功能障碍[平均值±标准差]。男性在SIP评分中的功能障碍比女性更多。
尽管存在严重的身体限制，但接受HMV治疗的患者自我感觉健康良好。与该诊断的NIV治疗相比，气管切开术治疗的小儿麻痹后遗症功能障碍患者和脊柱侧弯患者自我感觉健康状况最佳。
