Variation in bowel and bladder continence across US spina bifida programs: A descriptive study

Issue title: Spina Bifida

Guest editors: Timothy Brei and Amy Houtrow

Article type: Research Article

Authors: Freeman, Kurt A.^{a; *} | Castillo, Heidi^b | Castillo, Jonathan^b | Liu, Tiebin^c | Schechter, Michael^d | Wiener, John S.^e | Thibadeau, Judy^c | Ward, Elisabeth^f | Brei, Timothy^g

Affiliations: [a] Institute on Development & Disability, Department of Pediatrics, Oregon Health & Science University, Portland, OR, USA | [b] Department of Developmental-Behavioral Pediatrics, Texas Children’s Hospital/Baylor College of Medicine, Houston, TX, USA | [c] Rare Disorders and Health Outcomes Team, Division of Human Development and Disability, National Center on Birth defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA | [d] Pediatric Pulmonary Medicine, Children’s Hospital of Richmond, Virginia Commonwealth University, Richmond, VA, USA | [e] Division of Urologic Surgery, Department of Surgery, Duke University Medical School, Durham, NC, USA | [f] National Center on Birth Defects and Developmental Disabilities, Carter Consulting Incorporated, Centers for Disease Control and Prevention, Atlanta, GA, USA | [g] Department of Pediatrics, University of Washington School of Medicine and Seattle Children’s Hospital, Seattle, WA, USA

Correspondence: [*] Corresponding author: Kurt A. Freeman, Institute on Development & Disability, Department of Pediatrics, Oregon Health & Science University, 707 SW Gaines, Portland, OR 97239, USA. Tel.: +1 503 494 0360; E-mail: [email protected].

Abstract: PURPOSE: Continence is low in individuals with spina bifida, but published prevalence varies markedly across studies. The objective of this study was to examine bladder and bowel continence among patients served by multidisciplinary clinics participating in the National Spina Bifida Patient Registry and to examine whether variation in prevalence exists across clinics. METHODS: Data were obtained from patients 5 years and older from March 2009 to December 2012. Data were gathered at clinic visits using standardized definitions. RESULTS: Data from 3252 individuals were included. Only 40.8% of participants were continent of urine; 43% were continent of stool. Bladder and bowel continence differed by spina bifida type, with those with myelomeningocele having significantly lower reported prevalence of continence than those with other forms of spina bifida. Bladder and bowel continence varied across registry sites. Adjustment based on demographic and condition-specific variables did not make substantive differences in prevalence observed. CONCLUSION: Less than half of spina bifida patients served in multidisciplinary clinics report bladder or bowel continence. Variability in prevalence was observed across clinics. Further research is needed to examine if clinic-specific variables (e.g., types of providers, types of interventions used) account for the observed variation.

Keywords: Spina bifida, continence, neurogenic bladder, urologic management, bowel and bladder impairment, registry

DOI: 10.3233/PRM-170450

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 10, no. 3-4, pp. 231-241, 2017