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Abstract：
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.
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.
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).
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.
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.
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).
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.
摘要：
目的：本研究旨在分析基于器官系统的死亡原因和基于非器官系统的死亡机制（COD，MOD）在患有脊髓脊膜膨出（MMC）的人中，将泌尿科与其他COD进行比较。
方法：对加拿大/美国的16个机构进行了非随机便利样本的MMC患者（出生>=1972年）的回顾性研究。
结果：在293例死亡（89%分流性脑积水）中，12%发生在婴儿期，35%的童年成年期为53％（记录的COD：74％）。对于261名分流人员，主要的COD是神经（21%）和肺（17%），主要的MOD是感染(34%，包括分流器感染：4％）和非感染性分流器故障（14％）。对于32个未分流的人来说，主要的COD是肺部（34%）和心血管（13%），主要的MOD是感染（38％）和非感染性肺部（16％）。COD和MOD随分流状态和年龄而变化(p<=0.04)，不是步行或出生年份（p>=0.16）。泌尿外科相关死亡（尿脓毒症，肾功能衰竭,血尿,膀胱穿孔/癌：10％）在女性中更有可能（p=0.01），独立于年龄,分流,或动态状态（p>=0.40）。COD/MOD与膀胱扩张无关（p=>0.11）。睡眠时无法解释的死亡（4％）与年龄无关，分流状态,和癫痫（p>=0.47）。
结论：COD随分流状态而变化。领导的国防部具有传染性。泌尿外科相关的死亡（10％）与分流状态无关；26％的COD未知。需要终身的多学科护理和准确的死亡率记录。
方法：对加拿大/美国的16个机构进行了非随机便利样本的MMC患者（出生>=1972年）的回顾性研究。
结果：在293例死亡（89%分流性脑积水）中，12%发生在婴儿期，35%的童年成年期为53％（记录的COD：74％）。对于261名分流人员，主要的COD是神经（21%）和肺（17%），主要的MOD是感染(34%，包括分流器感染：4％）和非感染性分流器故障（14％）。对于32个未分流的人来说，主要的COD是肺部（34%）和心血管（13%），主要的MOD是感染（38％）和非感染性肺部（16％）。COD和MOD随分流状态和年龄而变化(p<=0.04)，不是步行或出生年份（p>=0.16）。泌尿外科相关死亡（尿脓毒症，肾功能衰竭,血尿,膀胱穿孔/癌：10％）在女性中更有可能（p=0.01），独立于年龄,分流,或动态状态（p>=0.40）。COD/MOD与膀胱扩张无关（p=>0.11）。睡眠时无法解释的死亡（4％）与年龄无关，分流状态,和癫痫（p>=0.47）。
结论：COD随分流状态而变化。领导的国防部具有传染性。泌尿外科相关的死亡（10％）与分流状态无关；26％的COD未知。需要终身的多学科护理和准确的死亡率记录。
