Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

Routh, Jonathan C.; Joseph, David B.; Liu, Tiebin; Schechter, Michael S.; Thibadeau, Judy; Wallis, M. Chad; Ward, Elisabeth; Wiener, John S.

doi:10.1016/j.juro.2017.08.084

Cited by 18 publications

(12 citation statements)

References 20 publications

(20 reference statements)

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“…We noted a similar variation in surgical management rates of neurogenic bladder among NSBPR clinics [19], and the pattern is also apparent in the choice of procedure since ACE/cecostomy procedures are commonly performed with bladder reconstruction. Importantly, those decisions also seem to include consideration of other non-medical aspects of each SB patient.…”

Section: Discussionmentioning

confidence: 93%

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

Routh

Joseph

Liu

et al. 2017

PRM

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PURPOSE Optimal management of neurogenic bowel in patients with spina bifida (SB) remains controversial. Surgical interventions may be utilized to treat constipation and provide fecal continence, but their use may vary among SB treatment centers. METHODS We queried the National Spina Bifida Patient Registry (NSBPR) to identify patients who underwent surgical interventions for neurogenic bowel. We abstracted demographic characteristics, SB type, functional level, concurrent bladder surgery, mobility, and NSBPR clinics to determine whether any of these factors were associated with interventions for management of neurogenic bowel. Multivariable logistic regression with adjustment for selection bias was performed. RESULTS We identified 5,528 patients with SB enrolled in the 2009–14 NSBPR. Of these, 1,088 (19.7%) underwent procedures for neurogenic bowel, including 957 (17.3%) ACE/cecostomy tube and 155 (2.8%) ileostomy/colostomy patients. Procedures were more likely in patients who were older, white, non-ambulatory, with higher-level lesion, with myelomeningocele lesion, with private health insurance (all p < 0.001), and female (p = 0.006). On multivariable analysis, NSBPR clinic, older age (both p < 0.001), race (p = 0.002), mobility status (p = 0.011), higher lesion level (p < 0.001), private insurance (p = 0.002) and female sex (p = 0.015) were associated with increased odds of surgery. CONCLUSIONS There is significant variation in rates of procedures to manage neurogenic bowel among NSBPR clinics. In addition to SB-related factors such as mobility status and lesion type/level, non-SB-related factors such as patient age, sex, race and treating center are also associated with the likelihood of undergoing neurogenic bowel intervention.

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Section: Discussionmentioning

confidence: 93%

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

Routh

Joseph

Liu

et al. 2017

PRM

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“…Routh et al () documented that 20.4% of participants had undergone bladder reconstruction surgery, including bladder augmentation, creation of a continent catheterizable channel, a bladder outlet procedure, or vesicostomy creation/closure. The authors documented that bladder reconstruction surgery rates varied significantly among centers.…”

Section: Resultsmentioning

confidence: 99%

“…Surgical candidates were more likely to have a diagnosis of MMC and a higher level of lesion, as well as be older, female, non‐Hispanic white, non‐ambulatory, and non‐privately insured. After correcting for known confounders, type of SB, age, gender, mobility, and clinical center remained significant predictors of receiving surgery; however, race and insurance status were not associated with intervention (Routh et al, ).…”

Section: Resultsmentioning

confidence: 99%

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The National Spina Bifida Patient Registry: A Decade's journey

Castillo

Lupo

et al. 2018

Birth Defects Research

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Background: The National Spina Bifida Patient Registry (NSBPR) was established in 2008, as a partnership between the CDC and spina bifida (SB) clinics throughout the United States. The purpose of this study is to explore the initial work of this project through a literature review of published studies from the NSBPR and provide a description of how this body of literature has developed overtime. Methods: We included studies indexed in MEDLINE by means of PubMed from January 2009 through April 2018. Included articles were appraised to identify key themes relevant to SB demographics, interventions, and outcomes. Additionally, information regarding objectives, hypotheses, and results of each study was summarized. Results: We identified 13 articles meeting inclusion criteria. These publications described findings or explored associations using NSBPR variables. They were grouped into four categories: general characteristics (4 studies), mobility and skin injury (2 studies), bowel continence (3 studies), and bladder continence (5 studies). Conclusions: The NSBPR represents one of the largest described clinical samples of individuals living with SB. The first decade of studies have focused primarily on descriptive analyses and on identifying predictors of clinical outcomes. These initial results may help develop interventions (including culturally appropriate initiatives), be a resource for developing international evidence-based standards of care and best-practices, and lead to improved outcomes for individuals living with SB globally. Additionally, the results underscore the strengths of the NSBPR's design and highlight the potential breadth of research topics that could be addressed in the future.

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“…This reveals that numerous factors likely affect achieving bladder and bowel continence. Evidence from other National Spina Bifida Patient Registry articles 4,5 reveal that the timing and frequency of surgeries that might impact continence vary among registry sites. Another confounding factor regarding continence may be a philosophy of waiting until a person with SB is "ready" to be continent rather than proactively addressing this issue.…”

Section: What Does This All Mean?mentioning

confidence: 99%

Perspectives on Surgical Care and Outcomes in Spina Bifida

Brei

Walker

2018

Pediatrics

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In this issue of Pediatrics, Alabi et al 1 describe surgical procedures and health outcomes by age in persons enrolled in the National Spina Bifida Patient Registry. Results from this descriptive study reveal that the incidence of 6 surgical procedure groups and 4 specific designated health outcomes vary by age and type of spina bifida (SB). This data-rich article contains clinically applicable information for pediatricians within the medical home model.

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Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry

Cited by 18 publications

References 20 publications

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

The National Spina Bifida Patient Registry: A Decade's journey

Perspectives on Surgical Care and Outcomes in Spina Bifida

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