Part C The aim of this project is to implement and evaluate a best practice Urologic Management Protocol for the Preservation of Renal Function (UPPF) in the Newborn/Young Child with Spina Bifida. The goal of the protocol is to develop standardized and effective urologic management in infants and young children with spina bifida, to preserve kidney function, lay the groundwork for long term continence and optimize long term health and well-being. It is estimated that 70,000 people in the United States are currently living with spina bifida. The majority of patients with spina bifida experience urologic complications related to their condition, including incontinence and possibly renal damage. Over the past several decades, significant advancements have been made in our understanding of the pathophysiology of neurogenic bladder dysfunction in children, which has allowed for earlier, more proactive therapeutic interventions aimed at the prevention of renal deterioration. Renal failure has historically been the leading cause of mortality in patients with myelomeningocele (MMC) followed through adulthood, reportedly accounting for a third of deaths. The significant impact of contemporary management with proactive urodynamic investigation, clean intermittent catheterization, antibiotic prophylaxis and anticholinergic therapy in children with MMC has shown a marked reduction in the rate of overall renal parenchymal damage. This project is innovative as it is a long term prospective study to test and evaluate the use of a standardized urologic management protocol for patients with spina bifida, beginning in the neonatal period. The data gathered through this project will provide researchers and clinicians with a robust database to test a systematic urologic protocol and to examine the long term urologic status of the population, enabling the development of evidence based clinical interventions to improve care outcomes and quality of life. Project objectives include outreach and education to CHLA faculty and staff, recruitment of 5-10 newborns per year from our Neonatal and Infant Critical Care Unit, implementation of the urologic protocol and collection and submission of data to the CDC, investigation of the effects of a standardized workflow on patient adherence and overall renal outcomes, assessment of parent and staff satisfaction with the urologic protocol, participation in research with other sites, and dissemination of findings.
Part C The aim of this project is to implement and evaluate a best practice Urologic Management Protocol for the Preservation of Renal Function (UPPF) in the Newborn/Young Child with Spina Bifida to develop standardized and effective urologic management in infants and young children with spina bifida, to preserve kidney function, lay the groundwork for long term continence and optimize long term health and well-being.
