Bihoro Ryoiku Hospital, Abashiri-gun, Hokkaido, Japan.
J Epidemiol. 2010;20(1):77-81. doi: 10.2188/jea.je20090024. Epub 2009 Nov 28.
Although the prognosis for survival in people with severe functional disabilities is a serious concern for their families and health care practitioners, there have been few reports on survival rates for this population. Every year, the Japanese Association of Welfare for Persons with Severe Motor and Intellectual Disability collects anonymous records of individual registrations and deaths from all private and public institutions, excepting national institutions. We used these data to estimate the prognosis for survival.
We reviewed the records of 3221 people with severe motor and intellectual disabilities (SMID); all subjects had lived in one of 119 public or private institutions in Japan between 1961 and 2003. Kaplan-Meier survival estimates were calculated according to disability type and birth year range.
Of the 3221 persons, 2645 were alive and 576 had died. The survival rate at the age of 20 for all subjects was 79% (95% confidence interval, 78%-81%). Among people who were unable to sit, those with lower intelligence quotients had lower survival rates.
The survival rate among people with SMID housed in public and private institutions in Japan was much worse than that of the general population, and has not improved since the 1960s.
尽管严重功能障碍患者的生存预后是其家庭和医疗保健从业者关注的焦点，但关于该人群的生存率报告却很少。日本严重运动和智力障碍者福利协会每年都会收集来自除国立机构外的所有私立和公立机构的个人登记和死亡的匿名记录。我们使用这些数据来估计生存预后。
我们回顾了 3221 名严重运动和智力障碍者（SMID）的记录；所有受试者都在日本的 119 个公立或私立机构中生活过，时间在 1961 年至 2003 年之间。根据残疾类型和出生年份范围计算 Kaplan-Meier 生存估计值。
在 3221 人中，2645 人仍然活着，576 人已经死亡。所有受试者在 20 岁时的生存率为 79%（95%置信区间，78%-81%）。在不能坐的人群中，智商较低的人生存率较低。
日本公立和私立机构收容的严重运动和智力障碍者的生存率远逊于普通人群，自 20 世纪 60 年代以来并未改善。
