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Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.


ABSTRACT:

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.

SUBMITTER: Szymanski KM 

PROVIDER: S-EPMC10789326 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Publications

Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.

Szymanski Konrad M KM   Adams Cyrus M CM   Alkawaldeh Mohammad Y MY   Austin Paul F PF   Bowman Robin M RM   Castillo Heidi H   Castillo Jonathan J   Chu David I DI   Estrada Carlos R CR   Fascelli Michele M   Frimberger Dominic C DC   Gargollo Patricio C PC   Hamdan Dawud G DG   Hecht Sarah L SL   Hopson Betsy B   Husmann Douglas A DA   Jacobs Micah A MA   MacNeily Andrew E AE   McLeod Daryl J DJ   Metcalfe Peter D PD   Meyer Theresa T   Misseri Rosalia R   O'Neil Joseph J   Rensing Adam J AJ   Routh Jonathan C JC   Rove Kyle O KO   Sawin Kathleen J KJ   Schlomer Bruce J BJ   Shamblin Isaac I   Sherlock Rebecca L RL   Slobodov Gennady G   Stout Jennifer J   Tanaka Stacy T ST   Weiss Dana A DA   Wiener John S JS   Wood Hadley M HM   Yerkes Elizabeth B EB   Blount Jeffrey J  

Journal of pediatric rehabilitation medicine 20230101 4


<h4>Purpose</h4>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.<h4>Methods</h4>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.<h4>Results</h4>Of 293 deaths (89% shunted hydrocephalus), 12% occurred in infancy, 35% in childhood, a  ...[more]

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