Issues of medical management in adults with spina bifida
Issues of medical management in adults with spina bifida
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DOI：
10.1007/s003810050502
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发表时间：
2000-04-01
影响因子：
1.4
通讯作者：
McCann, JP
中科院分区：
文献类型：
--
作者：
McDonnell, GV;McCann, JP
这项研究的目的是确定在成人脊柱裂(SB)和脑积水(Casbah)诊所就诊的患者的医疗问题范围。在过去的三四十年里，由于医疗保健的改善，越来越多的SB患者在成年后继续蓬勃发展。自1990年以来，贝尔法斯特一直有一项卡斯巴服务，为北爱尔兰提供区域服务。现在有237名患者仍在卡斯巴的活体登记册上。所有记录均以病变部位、活动能力、分流位置和就诊规律为依据进行复查。193例的记录还参考了肌肉骨骼问题、膀胱功能、肠道功能、肾损害和高血压、皮肤破裂、癫痫和临床上有意义的Chiari/脊髓空洞症的发生率。在登记的病人中，36%的人依赖轮椅，8%的人有一定的活动能力，但主要依赖轮椅，22%的人需要帮助才能行走，34%的人独立行走。8%的患者膀胱功能正常，32%的患者肠道功能正常。48%的患者存在肾损害，15%的患者正在接受降压治疗。9%的患者癫痫是一个活跃的问题，37%的患者在原位进行脑室分流。50%的患者存在脊柱侧弯，70%的患者有关节畸形或痉挛。5名患者因Chiari/脊髓空洞症复合症而出现症状。这些数据反映了成年SB患者的相当大范围的残疾，长期管理中存在的挑战，以及有组织的随访的需要。
The objective of this study was to establish the range of medical issues among those attending a clinic for adults with spina bifida (SB) and hydrocephalus (CASBAH). Owing to improvements in medical care in the past 3-4 decades, an increasing number of SB patients go on to prosper in adult life. Since 1990 there has been a CASBAH service in Belfast serving Northern ireland on a regional basis. There are now 237 patients with SB remaining on the live register at CASBAH. All records were reviewed with regard to site of lesion, ambulatory ability, shunt placement and regularity of attendance. The records of 193 were also reviewed with reference to musculoskeletal problems, bladder function, bowel function, renal impairment and hypertension, skin breakdown, epilepsy and the incidence of clinically significant Chiari/hydrosyringomyelia. Of the patients on the register, 36% are wheelchair dependent, 8% have some ambulatory capacity but are largely wheelchair dependent, 22% are ambulatory with aid and 34% are independently ambulatory. Bladder function is normal in 8%, whilst 32% describe normal bowel function. Renal impairment is present in 48% of patients, and 15% are on anti-hypertensive therapy. Epilepsy is an active issue in 9%, and intraventricular shunts are in situ in 37% of patients. Scoliosis is present in 50% and 70% have joint deformities or contractures. Five patients have become symptomatic from the Chiari/hydrosyringomyelia complex. These data reflect the considerable range of disability in adult SB patients, the challenges presented in long-term management and the need for organised follow-up.