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西澳大利亚脑瘫患者的预期寿命。

Life expectancy among people with cerebral palsy in Western Australia.

作者信息

Blair E, Watson L, Badawi N, Stanley F J

机构信息

TVW Telethon Institute for Child Health Research, University of Western Australia, Perth, Australia.

出版信息

Dev Med Child Neurol. 2001 Aug;43(8):508-15. doi: 10.1017/s0012162201000949.

Abstract

This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were identified (1154 males, 860 females), of whom 225 had died by 1 June 1997. Using date-of-death data, crude and standardized mortality rates were estimated and predictors of mortality sought using survival analysis stratified by decade of birth, description of impairments, and demographic and perinatal variables. For those born after 1967, the cause of death profile was examined over time. Mortality exceeded 1% per annum in the first 5 years and declined to age 15 years after which it remained steady at about 0.35% for the next 20 years. The strongest single predictor was intellectual disability, but all forms of disability contributed to decreased life expectancy. Half of those with IQ/DQ score <20 survived to adulthood, increasing to 76% with IQ/DQ score 20-34, and exceeding 92% for higher scores. Severe motor impairment primarily increased the risk of early mortality. Despite there being 72 persons aged from 25 to 41 years with severe motor impairment in our data set, none had died after the age of 25 years. Infants born after more than 32 weeks' gestation were at significantly higher risk of mortality than very preterm infants, accounted for by their higher rates of intellectual disability. No improvements in survival of persons with CP were seen over the study period despite advances in medical care, improved community awareness, and the increasing proportion of very preterm births among people with CP. This may be the result of improved neonatal care enabling the survival of infants with increasingly severe disabilities.

摘要

本报告利用西澳大利亚脑瘫登记处识别出的、出生于1958年至1994年之间的个体,描述了脑瘫(CP)患者的死亡率趋势、预测因素和病因。共识别出2014人(1154名男性,860名女性),其中225人在1997年6月1日前死亡。利用死亡日期数据,估计了粗死亡率和标准化死亡率,并采用生存分析方法,按出生年代、损伤描述以及人口统计学和围产期变量进行分层,寻找死亡率的预测因素。对于1967年以后出生的人群,还对其随时间推移的死因情况进行了研究。头5年的年死亡率超过1%,到15岁时下降,此后在接下来的20年里稳定在约0.35%。最强的单一预测因素是智力残疾,但所有形式的残疾都会导致预期寿命缩短。智商/发育商(IQ/DQ)得分<20的患者中,有一半存活至成年,IQ/DQ得分在20 - 34之间的患者这一比例增至76%,得分更高时则超过92%。严重运动障碍主要增加了早期死亡风险。尽管我们的数据集中有72名年龄在25至41岁之间的严重运动障碍患者,但无人在25岁以后死亡。孕龄超过32周出生的婴儿死亡率显著高于极早产儿,原因是他们的智力残疾发生率较高。尽管医疗护理有所进步、社区意识提高,且脑瘫患者中极早产的比例不断增加,但在研究期间,脑瘫患者的生存率并未得到改善。这可能是由于新生儿护理的改善使越来越多严重残疾的婴儿得以存活。

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