Glover G, Williams R, Heslop P, Oyinlola J, Grey J
Learning Disabilities Observatory Team, Public Health England, Cambridge, UK.
The Clinical Practice Research Datalink Group, The Medicines and Healthcare Products Regulatory Agency, London, UK.
J Intellect Disabil Res. 2017 Jan;61(1):62-74. doi: 10.1111/jir.12314. Epub 2016 Aug 2.
People with intellectual disabilities (IDs) die at younger ages than the general population, but nationally representative and internationally comparable mortality data about people with ID, quantifying the extent and pattern of the excess, have not previously been reported for England.
We used data from the Clinical Practice Research Datalink database for April 2010 to March 2014 (CPRD GOLD September 2015). This source covered several hundred participating general practices comprising roughly 5% of the population of England in the period studied. General practitioner (GP) records identified people diagnosed by their GP as having ID. Linked national death certification data allowed us to derive corresponding mortality data for people with and without ID, overall and by cause.
Mortality rates for people with ID were significantly higher than for those without. Their all-cause standardised mortality ratio was 3.18. Their life expectancy at birth was 19.7 years lower than for people without ID. Circulatory and respiratory diseases and neoplasms were the three most common causes of death for them. Cerebrovascular disease, thrombophlebitis and pulmonary embolism all had standardised mortality ratios greater than 3 in people with ID. This has not been described before. Other potentially avoidable causes included epilepsy (3.9% of deaths), aspiration pneumonitis (3.6%) and colorectal cancer (2.4%). Avoidable mortality analysis showed a higher proportion of deaths from causes classified as amenable to good medical care but a lower proportion from preventable causes compared with people without ID. International comparison to areas for which data have been published in sufficient detail for calculation of directly standardised rates suggest England may have higher death rates for people with ID than areas in Canada and Finland, and lower death rates than Ireland or the State of Massachusetts in the USA.
National data about mortality in people with ID provides a basis for public health interventions. Linked data using GP records to identify people with ID could provide comprehensive population-based monitoring in England, unbiased by the circumstances of illnesses or death; to date information governance constraints have prevented this. However, GPs in England currently identify only around 0.5% of the population as having ID, suggesting that individuals with mild, non-syndromic ID are largely missed. Notably common causes of death suggest control of cardiovascular risk factors, epilepsy and dysphagia, management of thrombotic risks and colorectal screening are important areas for health promotion initiatives.
智力残疾（ID）患者的死亡年龄低于普通人群，但此前英格兰尚未报告过关于ID患者的具有全国代表性且可在国际上进行比较的死亡率数据，这些数据可量化超额死亡率的程度和模式。
我们使用了临床实践研究数据链数据库2010年4月至2014年3月的数据（2015年9月CPRD GOLD）。该数据源涵盖了数百个参与的全科医疗诊所，在所研究期间约占英格兰人口的5%。全科医生（GP）记录确定了被其诊断为患有ID的患者。关联的国家死亡证明数据使我们能够得出有ID和无ID患者的相应死亡率数据，包括总体死亡率和按病因分类的死亡率。
ID患者的死亡率显著高于非ID患者。他们的全因标准化死亡率为3.18。他们出生时的预期寿命比非ID患者低19.7岁。循环系统疾病、呼吸系统疾病和肿瘤是他们最常见的三种死因。脑血管疾病、血栓性静脉炎和肺栓塞在ID患者中的标准化死亡率均大于3。此前尚未有过此类描述。其他潜在可避免的死因包括癫痫（占死亡人数的3.9%）、吸入性肺炎（3.6%）和结直肠癌（2.4%）。可避免死亡率分析显示，与非ID患者相比，因被归类为可通过良好医疗护理解决的病因导致的死亡比例更高，但因可预防病因导致的死亡比例更低。与已详细公布数据以计算直接标准化率的地区进行国际比较表明，英格兰ID患者的死亡率可能高于加拿大和芬兰的地区，低于爱尔兰或美国马萨诸塞州。
关于ID患者死亡率的国家数据为公共卫生干预提供了依据。利用GP记录识别ID患者的关联数据可在英格兰提供全面的基于人群的监测，不受疾病或死亡情况的影响；迄今为止，信息治理方面的限制阻止了这一点。然而，目前英格兰的全科医生仅识别出约0.5%的人口患有ID，这表明轻度、非综合征性ID患者大多未被发现。值得注意的是，常见死因表明控制心血管危险因素、癫痫和吞咽困难、管理血栓形成风险以及进行结直肠癌筛查是健康促进举措的重要领域。
