Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida

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

Research output: Contribution to journalArticle

37 Scopus citations

Abstract

Purpose Care of children with spina bifida has significantly advanced in the last half century, resulting in gains in longevity and quality of life for affected children and caregivers. Bladder dysfunction is the norm in patients with spina bifida and may result in infection, renal scarring and chronic kidney disease. However, the optimal urological management for spina bifida related bladder dysfunction is unknown. Materials and Methods In 2012 the Centers for Disease Control and Prevention convened a working group composed of pediatric urologists, nephrologists, epidemiologists, methodologists, community advocates and Centers for Disease Control and Prevention personnel to develop a protocol to optimize urological care of children with spina bifida from the newborn period through age 5 years. Results An iterative quality improvement protocol was selected. In this model participating institutions agree to prospectively treat all newborns with spina bifida using a single consensus based protocol. During the 5-year study period outcomes will be routinely assessed and the protocol adjusted as needed to optimize patient and process outcomes. Primary study outcomes include urinary tract infections, renal scarring, renal function and bladder characteristics. The protocol specifies the timing and use of testing (eg ultrasonography, urodynamics) and interventions (eg intermittent catheterization, prophylactic antibiotics, antimuscarinic medications). Starting in 2014 the Centers for Disease Control and Prevention began funding 9 study sites to implement and evaluate the protocol. Conclusions The Centers for Disease Control and Prevention 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 urinary tract infections, renal function, renal scarring and clinical process improvements.

Original languageEnglish (US)
Pages (from-to)1728-1734
Number of pages7
JournalJournal of Urology
Volume196
Issue number6
DOIs
StatePublished - Dec 1 2016

Keywords

  • neurogenic
  • pediatrics
  • spinal dysraphism
  • urinary bladder
  • urology

ASJC Scopus subject areas

  • Urology

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    Routh, J. C., Cheng, E. Y., Austin, J. C., Baum, M. A., Gargollo, P. C., Grady, R. W., Herron, A. R., Kim, S. S., King, S. J., Koh, C. J., Paramsothy, P., Raman, L., Schechter, M. S., Smith, K. A., Tanaka, S. T., Thibadeau, J. K., Walker, W. O., Wallis, M. C., Wiener, J. S., & Joseph, D. B. (2016). Design and Methodological Considerations of the Centers for Disease Control and Prevention Urologic and Renal Protocol for the Newborn and Young Child with Spina Bifida. Journal of Urology, 196(6), 1728-1734. https://doi.org/10.1016/j.juro.2016.07.081