Kiani R, Tyrer F, Jesu A, Bhaumik S, Gangavati S, Walker G, Kazmi S, Barrett M
Adult Learning Disability Service, Leicestershire Partnership NHS Trust, Leicester, UK; Department of Health Sciences, University of Leicester, Leicester, UK.
J Intellect Disabil Res. 2014 Jun;58(6):508-20. doi: 10.1111/jir.12047. Epub 2013 May 7.
People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID.
All adults (≥20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post-mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs).
A total of 898 adults with ID had died over the 18-year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty-six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All-cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0-2.4] and 2.8 (95% CI: 2.5-3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7-3.8) and 5.6 (95% CI: 4.6-6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9-60.2) and 52.0 for women (95% CI: 23.8-98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post-mortem reports or carers' referral for bereavement counselling.
The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.
与普通人群相比，智障（ID）和癫痫患者更易过早死亡。通过更好地控制癫痫发作、定期监测以及提高患者和护理人员的意识，癫痫患者中相当一部分死亡可能是可以预防的。本项目的目的是研究成年智障患者中癫痫性猝死（SUDEP）的死亡率。
利用莱斯特郡智障登记数据库，确定了1993年至2010年间居住在英国莱斯特市、莱斯特郡和拉特兰且患有智障的所有成年人（≥20岁）。利用国家统计局（ONS）的死亡证明数据，确定了同期死亡的有和没有智障的人群。确定了可能和确定的SUDEP死亡病例。如有可能，从病例记录和尸检报告中获取了死于可能或确定的SUDEP的成年智障患者的其他信息。使用标准化死亡率（SMR）将成年智障患者中可能和确定的SUDEP病例与普通人群进行比较。
在18年的研究期间，共有898名成年智障患者死亡。其中，244例（27%）死亡发生在被诊断患有癫痫的智障患者中。26名智障患者死于可能或确定的SUDEP，这是成年智障和癫痫患者中第二常见的死亡原因。智障男性和女性的全因特异性SMR分别为2.2[95%置信区间（CI）：2.0 - 2.4]和2.8（95%CI：2.5 - 3.1）。智障且患有癫痫的男性和女性的SMR分别为3.2（95%CI：2.7 - 3.8）和5.6（95%CI：4.6 - 6.7）。在同一研究期间，83名没有智障的成年人死于可能或确定的SUDEP。智障患者中SUDEP的SMR男性为37.6（95%CI：21.9 - 60.2），女性为52.0（95%CI：23.8 - 98.8）。我们发现，在大多数智障病例中，关于死亡情况的详细记录很少，没有与患者/护理人员就SUDEP风险进行沟通，并且缺乏尸检报告或护理人员转介进行丧亲辅导。
作者认为，在日常临床实践中，应对所有成年智障和癫痫患者在多机构/多学科框架下进行全面风险管理，以降低智障患者的死亡率。
