Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.
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2023-12
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Abstract
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.Type
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Szymanski, Konrad M, Cyrus M Adams, Mohammad Y Alkawaldeh, Paul F Austin, Robin M Bowman, Heidi Castillo, Jonathan Castillo, David I Chu, et al. (2023). Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study. Journal of pediatric rehabilitation medicine. pp. 1–15. 10.3233/prm-220086 Retrieved from https://hdl.handle.net/10161/29579.
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Scholars@Duke
Jonathan Charles Routh
I am a pediatric urologist and health services researcher who is interested in caring for children with urological problems, conducting research on how to improve that care, and mentoring young researchers to ensure that the next generation does both better than I currently can.
My clinical interests include minimally-invasive surgery, neurogenic and non-neurogenic voiding dysfunction, complex urologic reconstruction (particularly in children with spina bifida), and pediatric urologic oncology (particularly Wilms tumor and rhabdomyosarcoma). My research has been funded by awards from the NIH, CDC, FDA, and multiple foundations and industry partners, and during my time on faculty at Duke I have had the pleasure of collaborating with many groups and individuals around the world on a number of projects. Over the past 15 years, I have formally mentored nearly 3 dozen undergraduates, medical students, urology residents, post-doctoral students, and junior faculty members across multiple disciplines (pediatrics, urogynecology, urology, and nursing).
John Samuel Wiener
As a general pediatric urologist, Dr. Wiener is involved with all aspects of pediatric urology as a clinician and researcher. His research interests are most focused, however, on the urologic management of neurogenic bladder and spina bifida and the molecular biology involving development of the genitourinary tract and disorders.
Dr. Wiener is the principal investigator at Duke for The National Spina Bifida Patient Registry and Urologic Management of Young Children with Spina Bifida protocol administered by the Centers for Disease Control and Prevention. These projects began at Duke in 2011 and 2015, respectively.
Dr. Wiener was previously a project director for the P50 Center for Undiagnosed Pediatric and Urogenital Disorders.
Dr. Wiener has served in national leadership positions in pediatric urology including President of the Society of Fetal Urology, Executive Council of Society for Pediatric Urology, and the Examination Committee of the American Board of Urology. He is currently on the Board of Directors of the Spina Bifida Association
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