Browsing by Subject "Myelomeningocele"

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    ItemOpen Access
    Causes of death among people with myelomeningocele: A multi-institutional 47-year retrospective study.
    (Journal of pediatric rehabilitation medicine, 2023-12) Szymanski, Konrad M; Adams, Cyrus M; Alkawaldeh, Mohammad Y; Austin, Paul F; Bowman, Robin M; Castillo, Heidi; Castillo, Jonathan; Chu, David I; Estrada, Carlos R; Fascelli, Michele; Frimberger, Dominic C; Gargollo, Patricio C; Hamdan, Dawud G; Hecht, Sarah L; Hopson, Betsy; Husmann, Douglas A; Jacobs, Micah A; MacNeily, Andrew E; McLeod, Daryl J; Metcalfe, Peter D; Meyer, Theresa; Misseri, Rosalia; O'Neil, Joseph; Rensing, Adam J; Routh, Jonathan C; Rove, Kyle O; Sawin, Kathleen J; Schlomer, Bruce J; Shamblin, Isaac; Sherlock, Rebecca L; Slobodov, Gennady; Stout, Jennifer; Tanaka, Stacy T; Weiss, Dana A; Wiener, John S; Wood, Hadley M; Yerkes, Elizabeth B; Blount, Jeffrey

    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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    ItemOpen Access
    Pediatric Neurogenic Bladder and Bowel Dysfunction: Will My Child Ever Be out of Diapers?
    (European urology focus, 2020-01-22) Johnston, Ashley W; Wiener, John S; Todd Purves, J
    CONTEXT:Managing patient and parent expectations regarding urinary and fecal continence is important with congenital conditions that produce neurogenic bladder and bowel dysfunction. Physicians need to be aware of common treatment algorithms and expected outcomes to best counsel these families. OBJECTIVE:To systematically evaluate evidence regarding the utilization and success of various modalities in achieving continence, as well as related outcomes, in children with neurogenic bladder and bowel dysfunction. EVIDENCE ACQUISITION:We performed a systematic review of the literature in PubMed/Medline in August 2019. A total of 114 publications were included in the analysis, including 49 for bladder management and 65 for bowel management. EVIDENCE SYNTHESIS:Children with neurogenic bladder conditions achieved urinary continence 50% of the time, including 44% of children treated with nonsurgical methods and 64% with surgical interventions. Patients with neurogenic bowel problems achieved fecal continence 75% of the time, including 78% of patients treated with nonsurgical methods and 73% with surgical treatment. Surgical complications and need for revisions were high in both categories. CONCLUSIONS:Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Surgical intervention can be successful in patients refractory to nonsurgical management, but the high complication and revision rates support their use as second-line therapy. This is consistent with guidelines issued by the International Children's Continence Society. PATIENT SUMMARY:Approximately half of children with neurogenic bladder dysfunction will achieve urinary continence, and about three-quarters of children with neurogenic bowel dysfunction will become fecally continent. Most children can be managed without surgery. Patients who do not achieve continence with nonsurgical methods frequently have success with operative procedures, but complications and requirements for additional procedures must be expected.