Care of children with spina bifida (SB) has significantly advanced over the last half-century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in SB patients and may result in infection, renal scarring, and chronic kidney disease. However, the optimal urologic management for SB-related bladder dysfunction is unknown.
In 2012, Centers for Disease Control and Prevention (CDC) convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates, and CDC personnel to develop a protocol to optimize urologic care of children with SB from the newborn period through 5 years of age.
An iterative quality-improvement protocol was selected; in this model, participating institutions agree to prospectively treat all newborns with SB using a single consensus-based protocol. Over the course of the 5-year study period, study outcomes are routinely assessed and the protocol adjusted as needed in order to optimize patient and process outcomes. Primary study outcomes include urinary tract infections (UTI), renal scarring, renal function, and bladder characteristics. The protocol specifies the timing and use of testing (e.g., ultrasonography, urodynamics) and interventions (e.g., intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014, the CDC began funding nine study sites to implement and evaluate the protocol.
The CDC Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida began accruing patients in 2015. Assessment in the first 5 years will focus on UTIs, renal function, renal scarring, and clinical process improvements.
The Journal of urology. 2016 Jul 27 [Epub ahead of print]
Jonathan C Routh, Earl Y Cheng, J Christopher Austin, Michelle A Baum, Patricio C Gargollo, Richard W Grady, Adrienne R Herron, Steven S Kim, Shelly J King, Chester J Koh, Pangaja Paramsothy, Lisa Raman, Michael S Schechter, Kathryn A Smith, Stacy T Tanaka, Judy K Thibadeau, William O Walker, M Chad Wallis, John S Wiener, David B Joseph
Division of Urology, Duke University Medical Center, Durham, NC., Division of Urology, Lurie Children's Hospital of Chicago, Chicago, IL., Department of Urology, Oregon Health Sciences University, Portland, OR., Division of Nephrology, Boston Children's Hospital, Boston, MA., Department of Urology, Mayo Clinic, Rochester, MN., Department of Urology, Seattle Children's Hospital, Seattle, WA., National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA., Division of Urology, Children's Hospital Los Angeles, Los Angeles, CA., Department of Urology, Riley Hospital for Children, Indianapolis, IN., Division of Urology, Texas Children's Hospital / Baylor College of Medicine, Houston, TX., National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA., Spina Bifida Association, Arlington, VA., Division of Pediatric Pulmonary Medicine, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, VA., Division of General Pediatrics, Children's Hospital Los Angeles, Los Angeles, CA., Division of Pediatric Urology, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, TN., National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA., Division of Developmental Medicine, Seattle Children's Hospital, Seattle, WA., Division of Urology, Primary Children's Hospital, Salt Lake City, UT., Division of Urology, Duke University Medical Center, Durham, NC., Department of Urology, University of Alabama-Birmingham, Birmingham, AL.