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