Improving the Urologic Care and Outcomes of Young Children with Spina Bifida in Wisconsin

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PROJECT SUMMARY/ABSTRACT In 2014, the Urologic Management to Preserve Initial Renal Function Protocol (UMPIRE Protocol) was introduced arising from a collaborative, evidence-based effort from experts in urological and renal management of children with spina bifida. This application represents an effort to continue and expand upon the ongoing UMPIRE Protocol assessments within the National Spina Bifida Patient Registry. This protocol offers a prime opportunity to validate and standardize care thresholds for infants and young children with spina bifida. Furthermore, work is needed to expand the protocol beyond the first 5 years of life. This application proposes to build upon existing data collection within the UMPIRE Protocol. The Spina Bifida Clinic at the Children’s Hospital of Wisconsin (CHW) would be an ideal collaborator for the next 5-year grant cycle. The clinic sees on average at least 11 new infants per year with spina bifida. Further, the Division of Pediatric Urology at CHW has been actively engaged in participant recruitment and prospective data capture for other urological diseases, including bladder exstrophy, setting a high standard for approach and recruitment. Therefore, the infrastructure and volume at CHW will ensure a robust participant enrollment effort throughout the study period. As an active member of the UMPIRE Protocol, we would propose multiple avenues of further study. First, by retrospectively validating the urodynamic risk thresholds defined in the first iteration of the protocol and prospectively assessing renal outcomes based on these risk thresholds, we will assess the clinical impact of the current UMPIRE Protocol through the first 5 years of implementation. Second, we will assess quality of life in participants on protocol, focusing caregiver burden for those parents and caregivers of infants and young children with spina bifida. These assessments are currently underutilized in the spina bifida population and will provide insight into the burden, including protocol burden, for these families. These will be important additional outcome measures when assessing utility and potential modifiable elements of the protocol. Finally, using the information gathered in the above summarized research approach, we will identify opportunities for improvements within the protocol. These improvements will include (a) potential additions or modifications to improve clinical outcomes in high risk children; (b) potential subtractions or omissions to the protocol to minimize caregiver burden and cost, when such studies would be felt to lack additive value; and (c) extend the protocol to children aged 6–10, with focus on continence outcomes and surgical procedures in addition to the aforementioned renal outcomes.