脊髓脊膜膨出症患者的死因:47 年多机构回顾性研究

IF 0.8 Q4 PEDIATRICS Journal of pediatric rehabilitation medicine Pub Date : 2023-12-07 DOI:10.3233/prm-220086
Konrad M. Szymanski, Cyrus M. Adams, Mohammad Y. Alkawaldeh, Paul F. Austin, Robin M. Bowman, H. Castillo, Jonathan Castillo, David I. Chu, Carlos R. Estrada, Michele Fascelli, Dominic C. Frimberger, Patricio C. Gargollo, Dawud G. Hamdan, Sarah L. Hecht, Betsy Hopson, D. Husmann, Micah A. Jacobs, A. MacNeily, D. McLeod, Peter D. Metcalfe, T. Meyer, R. Misseri, Joseph O. O’Neil, A. Rensing, Jonathan C. Routh, K. Rove, K. Sawin, B. Schlomer, Isaac Shamblin, Rebecca L. Sherlock, G. Slobodov, Jennifer Stout, Stacy T. Tanaka, Dana A. Weiss, John S. Wiener, Hadley M. Wood, E. Yerkes, Jeffrey Blount
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引用次数: 0

摘要

目的:本研究旨在分析脊髓脊膜膨出(MMC)患者的器官系统死亡原因和非器官系统死亡机制(COD, MOD),并比较泌尿系统和其他死因。方法:采用非参数统计方法对加拿大/美国16家机构的MMC(出生> = 1972)非随机方便样本进行回顾性分析。结果:293例死亡(89%为分流性脑积水)中,12%发生在婴儿期,35%发生在儿童期,53%发生在成年期(记录的COD: 74%)。在261名分流患者中,主要的COD是神经系统(21%)和肺部(17%),主要的MOD是感染(34%,包括分流感染:4%)和非感染性分流故障(14%)。在32例未分流的患者中,COD主要为肺部(34%)和心血管(13%),MOD主要为感染(38%)和非感染性肺部(16%)。COD和MOD与分流状态和年龄有关(p < = 0.04),而与行走和出生年龄无关(p > = 0.16)。泌尿相关死亡(尿脓毒症、肾衰竭、血尿、膀胱穿孔/癌症:10%)在女性中更有可能(p = 0.01),与年龄、分流术或门诊状态无关(p > = 0.40)。COD/MOD与膀胱增强无关(p= >0.11)。原因不明的睡眠死亡(4%)与年龄、分流状态和癫痫无关(p >= 0.47)。结论:分流状态不同,COD不同。主要的MOD具有传染性。泌尿相关死亡(10%)与分流状态无关;26%的COD未知。需要终身多学科护理和准确的死亡率记录。
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Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study
PURPOSE: This study aimed to analyze organ system-based causes and non-organ system-based mechanisms of death (COD, MOD) in people with myelomeningocele (MMC), comparing urological to other COD. METHODS: A retrospective review was performed of 16 institutions in Canada/United States of non-random convenience sample of people with MMC (born > = 1972) using non-parametric statistics. RESULTS: Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, and 53% in adulthood (documented COD: 74%). For 261 shunted individuals, leading COD were neurological (21%) and pulmonary (17%), and leading MOD were infections (34%, including shunt infections: 4%) and non-infectious shunt malfunctions (14%). For 32 unshunted individuals, leading COD were pulmonary (34%) and cardiovascular (13%), and leading MOD were infections (38%) and non-infectious pulmonary (16%). COD and MOD varied by shunt status and age (p < = 0.04), not ambulation or birthyear (p > = 0.16). Urology-related deaths (urosepsis, renal failure, hematuria, bladder perforation/cancer: 10%) were more likely in females (p = 0.01), independent of age, shunt, or ambulatory status (p > = 0.40). COD/MOD were independent of bladder augmentation (p= >0.11). Unexplained deaths while asleep (4%) were independent of age, shunt status, and epilepsy (p >= 0.47). CONCLUSION: COD varied by shunt status. Leading MOD were infectious. Urology-related deaths (10%) were independent of shunt status; 26% of COD were unknown. Life-long multidisciplinary care and accurate mortality documentation are needed.
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5.30%
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139
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