%0 Multicenter Study
%T Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.
%A Szymanski KM
%A Adams CM
%A Alkawaldeh MY
%A Austin PF
%A Bowman RM
%A Castillo H
%A Castillo J
%A Chu DI
%A Estrada CR
%A Fascelli M
%A Frimberger DC
%A Gargollo PC
%A Hamdan DG
%A Hecht SL
%A Hopson B
%A Husmann DA
%A Jacobs MA
%A MacNeily AE
%A McLeod DJ
%A Metcalfe PD
%A Meyer T
%A Misseri R
%A O'Neil J
%A Rensing AJ
%A Routh JC
%A Rove KO
%A Sawin KJ
%A Schlomer BJ
%A Shamblin I
%A Sherlock RL
%A Slobodov G
%A Stout J
%A Tanaka ST
%A Weiss DA
%A Wiener JS
%A Wood HM
%A Yerkes EB
%A Blount J
%J J Pediatr Rehabil Med
%V 16
%N 4
%D 2023 Dec 7
%M 38073338
暂无%R 10.3233/PRM-220086
%X 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.