Jonathan C Routh1, Earl Y Cheng2, J Christopher Austin3, Michelle A Baum4, Patricio C Gargollo5, Richard W Grady6, Adrienne R Herron7, Steven S Kim8, Shelly J King9, Chester J Koh10, Pangaja Paramsothy7, Lisa Raman11, Michael S Schechter12, Kathryn A Smith13, Stacy T Tanaka14, Judy K Thibadeau7, William O Walker15, M Chad Wallis16, John S Wiener17, David B Joseph18. 1. Division of Urology, Duke University Medical Center, Durham, North Carolina. Electronic address: jonathan.routh@duke.edu. 2. Division of Urology, Lurie Children's Hospital of Chicago, Chicago, Illinois. 3. Department of Urology, Oregon Health Sciences University, Portland, Oregon. 4. Division of Nephrology, Boston Children's Hospital, Boston, Massachusetts. 5. Department of Urology, Mayo Clinic, Rochester, Minnesota. 6. Department of Urology, Seattle Children's Hospital, Seattle, Washington. 7. National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia. 8. Division of Urology, Children's Hospital Los Angeles, Los Angeles, California. 9. Department of Urology, Riley Hospital for Children, Indianapolis, Indiana. 10. Division of Urology, Texas Children's Hospital/Baylor College of Medicine, Houston, Texas. 11. Spina Bifida Association, Arlington, Virginia. 12. Division of Pediatric Pulmonary Medicine, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia. 13. Division of General Pediatrics, Children's Hospital Los Angeles, Los Angeles, California. 14. Division of Pediatric Urology, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee. 15. Division of Developmental Medicine, Seattle Children's Hospital, Seattle, Washington. 16. Division of Urology, Primary Children's Hospital, Salt Lake City, Utah. 17. Division of Urology, Duke University Medical Center, Durham, North Carolina. 18. Department of Urology, University of Alabama-Birmingham, Birmingham, Alabama.
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.
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.
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