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Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.

Publication ,  Journal Article
Szymanski, KM; Adams, CM; Alkawaldeh, MY; Austin, PF; Bowman, RM; Castillo, H; Castillo, J; Chu, DI; Estrada, CR; Fascelli, M; Frimberger, DC ...
Published in: J Pediatr Rehabil Med
2023

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.

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Published In

J Pediatr Rehabil Med

DOI

EISSN

1875-8894

Publication Date

2023

Volume

16

Issue

4

Start / End Page

605 / 619

Location

Netherlands

Related Subject Headings

  • Ventriculoperitoneal Shunt
  • Retrospective Studies
  • Meningomyelocele
  • Hydrocephalus
  • Humans
  • Female
  • Cause of Death
  • 3213 Paediatrics
  • 1114 Paediatrics and Reproductive Medicine
 

Citation

APA
Chicago
ICMJE
MLA
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Szymanski, K. M., Adams, C. M., Alkawaldeh, M. Y., Austin, P. F., Bowman, R. M., Castillo, H., … Blount, J. (2023). Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study. J Pediatr Rehabil Med, 16(4), 605–619. https://doi.org/10.3233/PRM-220086
Szymanski, Konrad M., Cyrus M. Adams, Mohammad Y. Alkawaldeh, Paul F. Austin, Robin M. Bowman, Heidi Castillo, Jonathan Castillo, et al. “Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.J Pediatr Rehabil Med 16, no. 4 (2023): 605–19. https://doi.org/10.3233/PRM-220086.
Szymanski KM, Adams CM, Alkawaldeh MY, Austin PF, Bowman RM, Castillo H, et al. Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study. J Pediatr Rehabil Med. 2023;16(4):605–19.
Szymanski, Konrad M., et al. “Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.J Pediatr Rehabil Med, vol. 16, no. 4, 2023, pp. 605–19. Pubmed, doi:10.3233/PRM-220086.
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. Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study. J Pediatr Rehabil Med. 2023;16(4):605–619.

Published In

J Pediatr Rehabil Med

DOI

EISSN

1875-8894

Publication Date

2023

Volume

16

Issue

4

Start / End Page

605 / 619

Location

Netherlands

Related Subject Headings

  • Ventriculoperitoneal Shunt
  • Retrospective Studies
  • Meningomyelocele
  • Hydrocephalus
  • Humans
  • Female
  • Cause of Death
  • 3213 Paediatrics
  • 1114 Paediatrics and Reproductive Medicine