Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1.
Scope of care in the first four years of life for individuals born with myelomeningocele: A single institution experience1.
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DOI：
10.3233/prm-200803
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发表时间：
2021
影响因子：
1.9
通讯作者：
Blount, Jeffrey P.
中科院分区：
文献类型：
--
作者：
Hopson, Betsy;Shamblin, Isaac;Zimmerman, Kathrin;Rocque, Brandon;Salehani, Arsalaan;Blount, Jeffrey P.
众所周知，脊髓脊膜膨出的儿童是大量医疗资源的消费者，有许多早期医院就诊。这项研究的目的是调查脊髓脊膜膨出患者在生命的前四年接受的医疗和手术护理的程度。从亚拉巴马儿童脊柱裂网络追踪器（一个前瞻性的、全面的脊柱裂数据库）中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入院、手术和门诊就诊相关的其他数据。纳入了2004年至2015年期间初步诊断为脊髓脊膜膨出的114例受试者。男性略占优势（55%），72%为白人，11%为西班牙裔/拉丁裔; 28%为中腰功能性病变水平。在生命的前四年，共进行了688次手术（平均每个儿童86次）：第1年438次，第2年100次，第3年84次，第4年66次。平均住院次数为40.5次。4年内每例患者的总平均驾驶时间为103.8小时。在医院度过的平均夜晚数为51。患有脊髓脊膜膨出的儿童在生命的前4年需要多次住院，手术和医疗接触。这些数据将是有价值的，当咨询新的父母和未来的父母与这种情况的儿童。
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. 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. One hundred and fourteen subjects with a primary diagnosis of myelomeningocele between 2004 and 2015 were included. Males slightly predominated (55%), 72% 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. 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.