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患有脊柱裂和脑积水的成年人为何死亡?一项基于诊所的研究。

Why do adults with spina bifida and hydrocephalus die? A clinic-based study.

作者信息

McDonnell G V, McCann J P

机构信息

Clinic for Adults with Spina Bifida & Hydrocephalus, Musgrave Park Hospital, Belfast, UK.

出版信息

Eur J Pediatr Surg. 2000 Dec;10 Suppl 1:31-2. doi: 10.1055/s-2008-1072411.

DOI:10.1055/s-2008-1072411
PMID:11214829
Abstract

AIM

To establish the death rate and factors contributing to death among attenders at a clinic for adults with spina bifida and hydrocephalus (CASBAH).

INTRODUCTION

Due to improvements in medical care in the past 40 years, increasing numbers of spina bifida patients go on to prosper in adult life. Despite this, levels of morbidity are high and services for such patients are uneven and unpredictable.

MATERIALS AND METHODS

Since 1990 there has been a CASBAH service in Belfast operating on a regional basis. Led by a consultant in rehabilitation medicine, it provides a multidisciplinary approach to patient care. Between 1990 and 1999 there have been 280 referrals to the clinic. Charts were reviewed regarding current health status and mode of death where relevant.

RESULTS

There have been 18 deaths during the term of the clinic (6.4%). There were four deaths due to renal failure and two due to cardiac failure. Two deaths occurred following surgery for a Chiari/hydrosyringomyelia complex and one patient died due to shunt malfunction. Three deaths were presumed related to infection. Two deaths were attributable to malignancy (carcinoma of a renal conduit and transitional cell carcinoma of the kidney) and other terminal events in one patient each were: basilar artery aneurysm rupture, post-partum pulmonary embolism, peptic ulcer disease, myocardial infarction and status epilepticus.

CONCLUSIONS

Although certain deaths were unpredictable during the period of review and not directly attributable to spina bifida, the majority reflect many of the related secondary health issues of the condition and indicate the need for organised, medically co-ordinated follow-up of adult patients.

摘要

目的

确定脊柱裂和脑积水成人患者诊所(CASBAH)就诊者的死亡率及死亡相关因素。

引言

由于过去40年医疗护理的改善,越来越多的脊柱裂患者成年后生活顺遂。尽管如此,此类患者的发病率仍然很高,针对他们的服务参差不齐且难以预测。

材料与方法

自1990年起,贝尔法斯特有一项基于地区开展的CASBAH服务。该服务由一名康复医学顾问牵头,采用多学科方法进行患者护理。1990年至1999年间,共有280例患者转诊至该诊所。对相关病历进行了审查,了解当前健康状况及死亡方式。

结果

在诊所运营期间有18例死亡(6.4%)。4例死于肾衰竭,2例死于心力衰竭。2例在进行Chiari/脊髓空洞症复合体手术后死亡,1例因分流器故障死亡。3例死亡推测与感染有关。2例死于恶性肿瘤(肾导管癌和肾移行细胞癌),另外各有1例患者的终末期事件分别为:基底动脉动脉瘤破裂、产后肺栓塞、消化性溃疡病、心肌梗死和癫痫持续状态。

结论

尽管在审查期间某些死亡不可预测且并非直接归因于脊柱裂,但大多数死亡反映了该疾病许多相关的继发性健康问题,表明需要对成年患者进行有组织的、医学协调的随访。

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