个体在出生时患有脊髓脊膜膨出的前四年的护理范围：一家机构的经验1 。

Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1.

机构信息

Department of Neurosurgery, Division of Pediatrics, University of Alabama at Birmingham, Birmingham, AL, USA.

Department of Neurosurgery, University of Alabama at Birmingham, Birmingham, AL, USA.

出版信息

J Pediatr Rehabil Med. 2021;14(4):667-673. doi: 10.3233/PRM-200803.

DOI:10.3233/PRM-200803

PMID:34864701

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9003993/

Abstract

PURPOSE

Children with myelomeningocele are known to be consumers of substantial healthcare resources, with many early hospital encounters. The purpose of this study was to survey the extent of medical and surgical care that patients with myelomeningocele receive during the first four years of life.

METHODS

Clinical and demographic data were collected on newborn infants with open myelomeningocele from the Children's of Alabama Spina Bifida Web Tracker, a prospective, comprehensive spina bifida database. Additional data pertaining to all hospital admissions, surgical procedures, and clinic visits were collected from the medical record.

RESULTS

One hundred and fourteen subjects with a primary diagnosis of myelomeningocele between 2004 and 2015 were included. Males slightly predominated (55%), 61.4% were Caucasian, 11% Hispanic/Latino; 28% had a mid-lumbar functional lesion level. Over the first four years of life, 688 total surgical procedures were performed (an average of 86 per child): 438 in year 1, 100 in year 2, 84 in year 3, and 66 in year 4. The mean number of hospital visits was 40.5. Total average drive time per patient over 4 years being 103.8 hours. Average number of nights spent in the hospital was 51.

CONCLUSION

Children with myelomeningocele need multiple hospitalizations, surgeries, and medical encounters in the first 4 years of life. These data will be valuable when counselling new parents and prospective parents of children with this condition.

摘要

目的

患有脊髓脊膜膨出的儿童已知是大量医疗保健资源的消费者，他们有许多早期的住院经历。本研究的目的是调查脊髓脊膜膨出患者在生命的头四年接受的医疗和手术护理的程度。

方法

从阿拉巴马儿童医院脊髓脊膜膨出网络追踪器（一个前瞻性的、全面的脊髓脊膜膨出数据库）收集了患有开放性脊髓脊膜膨出的新生儿的临床和人口统计学数据。从病历中收集了与所有住院、手术程序和就诊有关的其他数据。

结果

纳入了 2004 年至 2015 年期间 114 名患有原发性脊髓脊膜膨出的受试者。男性略占优势（55%），61.4%为白种人，11%为西班牙裔/拉丁裔；28%的人有中腰部功能损伤水平。在生命的头四年中，共进行了 688 次手术（平均每个孩子 86 次）：第 1 年 438 次，第 2 年 100 次，第 3 年 84 次，第 4 年 66 次。平均就诊次数为 40.5 次。每位患者在 4 年内的平均车程时间为 103.8 小时。平均住院天数为 51 天。