Dillon C M, Davis B E, Duguay S, Seidel K D, Shurtleff D B
Department of Pediatrics, University of Washington School of Medicine, Seattle 98195, USA.
Eur J Pediatr Surg. 2000 Dec;10 Suppl 1:33-4. doi: 10.1055/s-2008-1072412.
There are limited data concerning the life expectancy for individuals born with myelomeningocele (MM), with and without hydrocephalus. To ascertain such data was our first purpose. We have selected all patients with MM in our computer database, The Patient Data Management System (PDMS/fx). Data were transferred to Excel for primary and SPSS/PC for final analysis by Kaplan-Meier life survival curves. Of the 1,054 patients with MM in the Birth Defects Clinic and the University of Washington Medical Center (UWMC) of Seattle, 505 are now over the age of 21 (391) or have died (114). Follow-up information was available since 1994 for 132, 62% of whom we have had contact within the past 2 years. The second purpose was to identify potential health factors associated with long-term outcome of patients with MM. Patient variables chosen as relevant to survival included hydrocephalus, treatment before or after 1975, and health maintenance determined by outcome for those receiving care within the last 5 years or those last seen before. Age at last appointment and reason for visit were determined in order to identify age-specific health care needs of the adult population. Survival and medical needs were obtained from the UWMC's computer database, Mindscape, and by telephone survey for adult patients not seen in the last 2 years. Death is more frequent earlier in life for those MM patients with hydrocephalus. Ordinary degenerative disorders affect MM patients earlier in life than normals. Our data extend life expectancy for patients with MM and hydrocephalus to age 40 years with some reliability for those treated from 1957 to 1974, but only 24 years for those treated with modern techniques after 1974. More data is needed to determine long-term survival.
关于患有和未患有脑积水的脊髓脊膜膨出（MM）患者的预期寿命，相关数据有限。确定此类数据是我们的首要目的。我们在计算机数据库“患者数据管理系统（PDMS/fx）”中选取了所有MM患者。数据被传输到Excel进行初步分析，并传输到SPSS/PC通过Kaplan-Meier生存曲线进行最终分析。在西雅图出生缺陷诊所和华盛顿大学医学中心（UWMC）的1054例MM患者中，505例现已超过21岁（391例）或已死亡（114例）。自1994年以来可获得132例患者的随访信息，其中62%在过去2年内我们与他们有过联系。第二个目的是确定与MM患者长期预后相关的潜在健康因素。被选为与生存相关的患者变量包括脑积水、1975年之前或之后的治疗，以及通过过去5年内接受治疗者或最后一次就诊者的结局来确定的健康维持情况。确定了最后一次就诊时的年龄和就诊原因，以确定成年人群特定年龄的医疗保健需求。生存情况和医疗需求从UWMC的计算机数据库Mindscape中获取，并通过电话调查获取过去2年未就诊的成年患者的相关信息。患有脑积水的MM患者在生命早期死亡更为频繁。普通退行性疾病在MM患者生命中的影响比正常人出现得更早。我们的数据将MM合并脑积水患者的预期寿命延长至40岁，对于1957年至1974年接受治疗的患者有一定可靠性，但对于1974年之后采用现代技术治疗的患者仅为24岁。需要更多数据来确定长期生存率。
