%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.