Moss A H, Casey P, Stocking C B, Roos R P, Brooks B R, Siegler M
Center for Health Ethics and Law, West Virginia University Health Sciences Center, Morgantown 26506-9022.
Neurology. 1993 Feb;43(2):438-43. doi: 10.1212/wnl.43.2.438.
We conducted this study to better inform amyotrophic lateral sclerosis (ALS) patients about home ventilation and to assist them in decision-making. We gathered data on the prevalence of ALS patients on home ventilation in northern Illinois and the percentage who chose it, and we asked identified subjects, their families, and physicians for their attitudes toward home ventilation. Fewer than 10% of ALS patients had chosen home ventilation, and fewer than 5% were still on it. Seventeen patients (90%) were glad to have chosen home ventilation and would choose it again. Family caregivers reported major burdens, and only half would choose it for themselves. The mean yearly cost of home ventilation was $153,252. Home ventilation is effective for ALS patients had desired by the small number who undergo it, but it imposes significant burdens on families.
我们开展这项研究是为了让肌萎缩侧索硬化症（ALS）患者更好地了解家庭通气，并协助他们进行决策。我们收集了伊利诺伊州北部接受家庭通气的ALS患者的患病率以及选择家庭通气的患者百分比的数据，还询问了已确定的患者、他们的家人以及医生对家庭通气的态度。不到10%的ALS患者选择了家庭通气，仍在接受家庭通气的患者不到5%。17名患者（90%）很高兴选择了家庭通气，并且会再次选择。家庭护理人员报告负担很重，只有一半的护理人员会为自己选择家庭通气。家庭通气的年均费用为153,252美元。家庭通气对接受它的少数ALS患者是有效的，但它给家庭带来了巨大负担。
