Surgeries and Health Outcomes Among Patients With Spina Bifida.

Surgeries and Health Outcomes Among Patients With Spina Bifida.
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DOI:
10.1542/peds.2017-3730
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发表时间:
2018-09
期刊:
影响因子:
8
通讯作者:
Valdez R
Valdez R
中科院分区:
医学2区
文献类型:
--
作者:
Alabi NB;Thibadeau J;Wiener JS;Conklin MJ;Dias MS;Sawin KJ;Valdez R

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脊柱裂(SB)患者通常会发生严重的继发性疾病,并接受与神经系统疾病、骨科异常、膀胱和肠道功能障碍以及皮肤破裂相关的外科手术。在这项研究中,我们使用国家脊柱裂患者登记处的连续横断面数据,(2009-2013年); n = 4664),我们检查了外科手术(胃肠道、神经系统、骨科、皮肤、泌尿系统和其他)和健康结局根据年龄和SB类型(脊髓脊膜膨出和非脊髓脊膜膨出),对SB患者的粪便排泄物、尿液排泄物、皮肤破损和羊水状态进行分析。所有入组的患者都有可用的健康结局数据,81.5%(n = 3801)的患者有完整的外科手术数据,在其一生中共进行了18891次手术。几乎所有的程序(91.4%)发生在参与者与脊髓脊膜膨出SB。对于这两种类型的SB,程序的分布不同的年龄。最常见的手术是神经系统手术,约有一半(53%)发生在1岁以下的患者中;骨科和泌尿外科手术的频率其次,但往往发生在年龄较大的患者中。在所有年龄组中,脊髓脊膜膨出SB患者的健康结果显示积极健康结果的频率低于非脊髓脊膜膨出SB患者。总的来说,粪便和尿液的排泄率和皮肤破裂率随年龄增加而增加,而行走能力随年龄下降。了解不同年龄和SB类型的外科手术和健康结局差异可以帮助临床医生和受影响的人群设定关于这些手术的发生和患者整个生命周期的结局的预期。
Patients with spina bifida (SB) typically develop serious secondary conditions and undergo surgical procedures related to neurologic disorders, orthopedic abnormalities, bladder and bowel dysfunction, and skin breakdown. In this study, we describe the age distribution of common surgical procedures and health outcomes in patients with SB. Using serial cross-sectional data from the National Spina Bifida Patient Registry (2009–2013; n = 4664), we examined surgical procedures (gastrointestinal, neurologic, orthopedic, skin, urologic, and other) and health outcomes (fecal continence, urinary continence, skin breakdown, and ambulation status) of patients with SB by age and SB type (myelomeningocele and nonmyelomeningocele). All patients who were enrolled had available health outcome data, and 81.5% (n = 3801) of patients had complete surgical procedure data, which totaled 18 891 procedures across their lifetimes. Almost all procedures (91.4%) occurred among participants with myelomeningocele SB. For both types of SB, the distribution of procedures varied by age. The most frequent procedures were neurologic, with approximately half (53%) occurring in patients <1 year of age; orthopedic and urologic procedures followed in frequency but tended to occur at older ages. The health outcomes for patients with myelomeningocele SB revealed lower frequencies of positive health outcomes than those for patients with nonmyelomeningocele SB across all age groups. Overall, the rates of fecal and urinary continence and skin breakdown increased with age whereas the ability to ambulate declined with age. Understanding the surgical procedures and health outcome variations by age and SB type can help clinicians and populations that are affected set expectations regarding the occurrence of these procedures and the outcomes throughout the patients’ life spans.
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期刊: PEDIATRICS
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