Department of Anesthesiology and Intensive Care Medicine, San Giovanni Battista-Molinette Hospital, University of Turin, Turin, Italy.
Pediatr Pulmonol. 2011 Jun;46(6):566-72. doi: 10.1002/ppul.21401. Epub 2010 Dec 30.
Improved technology, as well as professional and parental awareness, enable many ventilator-dependent children to live at home. However, the profile of this growing population, the quality and adequacy of home care, and patients' needs still require thorough assessment.
To define the characteristics of Italian children receiving long-term home mechanical ventilation (HMV) in Italy.
A detailed questionnaire was sent to 302 National Health Service hospitals potentially involved in the care of HVM in children (aged <17 years). Information was collected on patient characteristics, type of ventilation, and home respiratory care.
A total of 362 HMV children was identified. The prevalence was 4.2 per 100,000 (95% CI: 3.8-4.6), median age was 8 years (interquartile range 4-14), median age at starting mechanical ventilation was 4 years (1-11), and 56% were male. The most frequent diagnostic categories were neuromuscular disorders (49%), lung and upper respiratory tract diseases (18%), hypoxic (ischemic) encephalopathy (13%), and abnormal ventilation control (12%). Medical professionals with nurses (for 62% of children) and physiotherapists (20%) participated in the patients' discharge from hospital, though parents were the primary care giver, and in 47% of cases, the sole care giver. Invasive ventilation was used in 41% and was significantly related to young age, southern regional residence, longer time spent under mechanical ventilation, neuromuscular disorders, or hypoxic (ischemic) encephalopathy.
Care and technical assistance of long-term HMV children need assessment, planning, and resources. A wide variability in pattern of HMV was found throughout Italy. An Italian national ventilation program, as well as a national registry, could be useful in improving the care of these often critically ill children.
先进的技术以及专业人员和家长意识的提高，使得许多依赖呼吸机的儿童能够在家中生活。然而，这一不断增长的人群的特征、家庭护理的质量和充分性以及患者的需求仍需要进行全面评估。
确定在意大利接受长期家庭机械通气（HMV）治疗的儿童的特征。
向 302 家可能参与儿童 HMV 护理的国家卫生服务医院（年龄<17 岁）发送了一份详细的调查问卷。收集了患者特征、通气类型和家庭呼吸护理方面的信息。
共确定了 362 名接受 HMV 的儿童。患病率为每 10 万人 4.2 例（95%CI：3.8-4.6），中位年龄为 8 岁（四分位间距 4-14），中位起始机械通气年龄为 4 岁（1-11），56%为男性。最常见的诊断类别为神经肌肉疾病（49%）、肺部和上呼吸道疾病（18%）、缺氧（缺血）性脑病（13%）和异常通气控制（12%）。护士（62%的儿童）和物理治疗师（20%）等医疗专业人员参与了患者的出院，但父母是主要照顾者，在 47%的情况下，父母是唯一的照顾者。41%的儿童使用了有创通气，且与年龄较小、南部地区居住、机械通气时间较长、神经肌肉疾病或缺氧（缺血）性脑病显著相关。
需要对长期 HMV 儿童的护理和技术支持进行评估、规划和资源配置。在意大利各地发现 HMV 模式存在广泛差异。意大利国家通气计划和国家登记册可能有助于改善这些经常患有重病的儿童的护理。
