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

Issue title: Spina Bifida

Guest editors: Timothy Brei and Amy Houtrow

Article type: Research Article

Authors: Routh, Jonathan C.^{a; *} | Joseph, David B.^b | Liu, Tiebin^c | Schechter, Michael S.^d | Thibadeau, Judy K.^c | Chad Wallis, M.^e | Ward, Elisabeth A.^{c; f} | Wiener, John S.^a

Affiliations: [a] Division of Urology, Duke University Medical Center, Durham, NC, USA | [b] Department of Urology, University of Alabama-Birmingham, Birmingham, AL, USA | [c] Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, Atlanta, GA, USA | [d] Division of Pediatric Pulmonary Medicine, Children’s Hospital of Richmond at Virginia Commonwealth University, Richmond, VA, USA | [e] Division of Urology, Primary Children’s Hospital, Salt Lake City, UT, USA | [f] Carter Consulting, Inc., Atlanta, GA, USA

Correspondence: [*] Corresponding author: Jonathan C. Routh, Duke University Medical Center, DUMC Box 3831, Durham, NC 27710, USA. Tel.: +1 919 684 6994; Fax: +1 919 681 5507; E-mail: [email protected].

Abstract: 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.

Keywords: Pediatrics, spina bifida, neurogenic bowel, clinical care variation

DOI: 10.3233/PRM-170460

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 10, no. 3-4, pp. 303-312, 2017