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Urologic data from the National Spina Bifida Patient Registry 2009-2012: Early Outcomes
John S. Wiener, MD1, David B. Joseph, MD2, Tiebin Liu, MSPH3, Elisabeth Ward, RN MPH3, Judy Thibadeau, RN MN3.
1Duke University, Durham, NC, USA, 2University of Alabama at Birmingham, Birmingham, AL, USA, 3Centers for Disease Control and Prevention, Atlanta, GA, USA.

BACKGROUND: The Centers for Disease Control and Prevention (CDC) host a nationwide registry of spina bifida patients enrolled at specialized clinics across the U.S. to better understand the characteristics and disease management of this unique patient population. Herein, we present the initial data related to urologic management. METHODS: Ten clinics began enrollment in 2009, and nine additional clinics joined in 2011. Informed consent was obtained from patients at these clinics to collect historical and current data based on 20 questions related to demographics and disease management. The data are centrally managed at CDC. This analysis is from the initial four years of the study. Continence of urine was defined as dry during the day. Bowel continence was defined as no occurrence of involuntary stool leakage during the day. RESULTS: A total of 3738 patients have been enrolled thus far, of which 21.0% were 18 years or older at time of last contact. Female patients comprised 51.8% of the cohort. The racial composition was 64.6% non-Hispanic white, 21.4% Hispanic, 7.3% non-Hispanic black, and 6.7% other. Private insurance was held by 47.8%. Spinal defect was 81.5% myelomeningocele and 18.5% other. Lesion level was 15.5% thoracic, 55.6% lumbar, and 28.9% sacral. Of those 5 years of age and older (n=2815 or 75.3%), 2481 (88.1%) had bladder impairment, and 2265 (80.5%) had bowel impairment. The bladder management techniques utilized by all patients aged 5 years or older were clean intermittent catheterization (72.9%), spontaneous void (14.8%), vesicostomy (3.4%), indwelling catheter (1.5%), and incontinent urostomy (0.7%). In all patients aged 5 years or older, urinary continence was reported by 43.7%, and bowel continence was reported by 50.7%. Urinary continence was reported by 36.2 % of those with bladder impairment, and bowel continence was reported by 38.7% of those with bowel impairment. Among all patients, the histories of urologic surgeries included bladder augmentation (12.4%), continent catheterizable channel (12.3%), and vesicostomy (5.1%). In the year prior to being queried, 1.4% had a bladder outlet procedure, and 1.4% had stone surgery. CONCLUSIONS: Initial registry analysis noted bladder and/or bowel impairment in over 80% of spina bifida patients of whom just more than one-third met the definitions of urinary or fecal continence. Continued implementation of this registry should help to better define best practices, improve care, and identify disparities in treatments and patient outcomes.

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