Graham Robert J, Fleegler Eric W, Robinson Walter M
Division of Critical Care, Department of Anesthesiology, Perioperative, and Pain Medicine, Children's Hospital Boston, 300 Longwood Ave, Boston, MA 02115-5724, USA.
Pediatrics. 2007 Jun;119(6):e1280-7. doi: 10.1542/peds.2006-2471. Epub 2007 May 7.
The purpose of this study was to describe the population of children with chronic mechanical ventilation in Massachusetts and their patterns of medical care.
Investigators surveyed all of the Massachusetts home ventilator clinics, pediatric pulmonary services, hospital-based pediatric services for special health care needs, insurers, home care vendors, nursing agencies, the Massachusetts Department of Public Health, selected individual providers, and rehabilitation and long-term care facilities providing services to children with chronic respiratory support needs. Support was defined as daily use of noninvasive, negative-pressure, or invasive/transtracheal ventilators. Subsequent matching of demographic data, including date of birth, zip code, and gender supported maximal census yield without duplications. Geographic information systems were used to create distribution maps and estimate distances between children with chronic mechanical ventilator needs and key resources.
A total of 197 children were identified as requiring chronic mechanical respiratory support in Massachusetts in 2005, which was a nearly threefold increase in this population in the 15-year interval since the last census. Congenital or perinatal-acquired neurologic or neuromuscular disorders constituted the majority of primary diagnoses (n = 107 [54%]). Chronic lung disease attributed to prematurity represented only 7% of the sample.
Children receiving chronic mechanical respiratory support are a growing population. The shift in underlying diagnoses from pulmonary disease to neurogenic respiratory insufficiency has implications for hospital and community-based providers from all disciplines in extending services to the home setting. Barriers encountered when performing this study, however, reflect an overall lack of coordination among the many individuals and agencies involved in their care. Coordinated and centralized care efforts require a clear and managed flow of information; census reports such as this one are only the beginning. Direct needs assessments and quality-of-life surveys from families are needed to design and implement programmatic changes and advocacy efforts.
本研究旨在描述马萨诸塞州慢性机械通气儿童的群体情况及其医疗护理模式。
研究人员对马萨诸塞州所有的家庭呼吸机诊所、儿科肺病服务机构、针对特殊医疗需求的医院儿科服务部门、保险公司、家庭护理供应商、护理机构、马萨诸塞州公共卫生部、选定的个体医疗服务提供者以及为有慢性呼吸支持需求儿童提供服务的康复和长期护理机构进行了调查。呼吸支持定义为每日使用无创、负压或有创/经气管呼吸机。随后对人口统计学数据（包括出生日期、邮政编码和性别）进行匹配，以在不重复的情况下实现最大普查产量。利用地理信息系统绘制分布图，并估算有慢性机械通气需求儿童与关键资源之间的距离。
2005年，马萨诸塞州共有197名儿童被确定需要慢性机械呼吸支持，自上次普查以来的15年间，这一群体数量增加了近两倍。先天性或围产期获得性神经或神经肌肉疾病构成了主要诊断的大多数（n = 107 [54%]）。早产所致慢性肺病仅占样本的7%。
接受慢性机械呼吸支持的儿童群体在不断增加。潜在诊断从肺部疾病向神经源性呼吸功能不全的转变，对所有学科的医院和社区医疗服务提供者将服务扩展至家庭环境具有启示意义。然而，开展本研究时遇到的障碍反映出参与其护理的众多个人和机构总体上缺乏协调。协调和集中的护理工作需要清晰且有序的信息流；这样的普查报告只是开始。需要对家庭进行直接需求评估和生活质量调查，以设计和实施项目变革及宣传工作。
