Olsson I, Dahl M, Mattsson S, Wendelius M, Aström E, Westbom L
Department of Paediatrics, Sahlgrenska University Hospital, Göteborg, Sweden.
Acta Paediatr. 2007 Mar;96(3):446-9. doi: 10.1111/j.1651-2227.2006.00153.x.
To describe the prevalence of myelomeningocele (MMC) and the medical needs of adolescents, 15-18 years, with MMC in Sweden, at a time when they are on the threshold of adulthood, leaving paediatrics.
In a retrospective study, we identified all adolescents with MMC, born during 1986-1989 and living in Sweden on July 1, 2004. An inventory was agreed upon with questions concerning their medical problems and need for medical care.
There were 175 persons 15-18 years of age, born with MMC or lipoMMC (prevalence 3.8 per 10,000). Hydrocephalus was seen in 86%, 31% had been operated because of tethered cord syndrome, and 6% for Chiari malformation symptoms. The majority had motor impairments. Clean intermittent catheterisation for bladder emptying was used by 85%, and 59% used enemas on a regular basis because of the neurogenic bowel dysfunction. Renal dysfunction was seen in 1.7% of the adolescents.
Lifelong follow-up by many specialists, among others neurologists and neurosurgeons, urotherapists and urologists, orthopaedic surgeons and orthotists, is necessary for individuals with MMC. The complex medical situation, often in combination with cognitive difficulties, makes it necessary to coordinate medical services for this increasing group of adults with multiple impairments.
描述瑞典15至18岁患有脊髓脊膜膨出（MMC）的青少年在即将成年、离开儿科时MMC的患病率及医疗需求。
在一项回顾性研究中，我们确定了所有于1986年至1989年出生且在2004年7月1日居住在瑞典的患有MMC的青少年。就有关他们的医疗问题和医疗需求的问题达成了一份清单。
有175名15至18岁的人出生时患有MMC或脂肪脊髓脊膜膨出（患病率为每10000人中有3.8人）。86%的人患有脑积水，31%的人因脊髓栓系综合征接受了手术，6%的人因Chiari畸形症状接受了手术。大多数人有运动障碍。85%的人使用清洁间歇性导尿来排空膀胱，59%的人因神经源性肠功能障碍定期使用灌肠剂。1.7%的青少年出现肾功能障碍。
对于患有MMC的个体，需要神经科医生、神经外科医生、泌尿治疗师和泌尿科医生、骨科医生和矫形师等众多专家进行终身随访。复杂的医疗状况，通常还伴有认知困难，使得有必要为这一不断增加的多重障碍成年人群体协调医疗服务。
