Szymanski, Konrad M.Adams, Cyrus M.Alkawaldeh, Mohammad Y.Austin, Paul F.Bowman, Robin M.Castillo, HeidiCastillo, JonathanChu, David I.Estrada, Carlos R.Fascelli, MicheleFrimberger, Dominic C.Gargollo, Patricio C.Hamdan, Dawud G.Hecht, Sarah L.Hopson, BetsyHusmann, Douglas A.Jacobs, Micah A.MacNeily, Andrew E.McLeod, Daryl J.Metcalfe, Peter D.Meyer, TheresaMisseri, RosaliaO'Neil, JosephRensing, Adam J.Routh, Jonathan C.Rove, Kyle O.Sawin, Kathleen J.Schlomer, Bruce J.Shamblin, IsaacSherlock, Rebecca L.Slobodov, GennadyStout, JenniferTanaka, Stacy T.Weiss, Dana A.Wiener, John S.Wood, Hadley M.Yerkes, Elizabeth B.Blount, Jeffrey2024-05-212024-05-212023Szymanski KM, Adams CM, Alkawaldeh MY, et al. Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study. J Pediatr Rehabil Med. 2023;16(4):605-619. doi:10.3233/PRM-220086https://hdl.handle.net/1805/40870Purpose: 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.en-USAttribution-NonCommercial 4.0 InternationalMyelomeningoceleSpinal dysraphismHydrocephalusCause of deathMortalityArticle