Citations 1
Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study
Szymanski, Konrad M. , Adams, Cyrus , Austin, Paul F. , Castillo, Heidi , Castillo, Jonathan , Chu, David I. , Estrada, Carlos R. , Fascelli, Michele , Frimberger, Dominic, Gargollo, Patricio C. , Hamdan, Dawud , Hecht, Sarah L. , Hopson, Betsy , Husmann, Douglas A. , Jacobs, Micah A. , MacNeily, Andrew E. , McLeod, Daryl J. , Meyer, Theresa , Misseri, Rosalia , O’Neil, Joseph, Rove, Kyle O. , Sawin, Kathleen J. , Schlomer, Bruce J., Shamblin, Isaac , Sherlock, Rebecca , Slobodov, Gennady , Stout, Jennifer, Tanaka, Stacy T. , Weiß, Dana , Wiener, John S. , Wood, Hadley , Yerkes, Elizabeth B. , Blount, Jeffrey P. , Alkawaldeh, Mohammad Y. , Bowman, Robin M. , Metcalfe, Peter , Rensing, Adam J. , Routh, Jonathan C.
Journal of Pediatric Rehabilitation Medicine | December 8, 2023 | Volume: 16 | Issue: 4 | Pages: 605-619
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.