The Adult Spina Bifida Patient: Does a Delay in Referral Impact Urodynamic Findings and Clinical Outcomes? Recommendations for Transition of Care
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INTRODUCTION: Improvements in the management of children with myelomeningocele have resulted in an influx of such patients, many of whom have complex neurogenic bladder conditions, to adult urologists. We reviewed the presenting symptoms, urodynamic findings, and changes in clinical management of adults with spina bifida, specifically focusing on the relationship between the delay in urological follow-up and clinical outcomes. METHODS: All patients with neurological conditions that presented for urologic evaluation at a tertiary referral center have been prospectively entered into a database since 2000. Data from patients with spina bifida including, bladder management, chief complaint, urodynamic findings (UDS), surgical interventions and upper tract imaging were analyzed. RESULTS: Of the 1110 patients in the database, 60 patients with spina bifida were identified (51.7% male, 48.3% female). Median age at presentation was 33 (16-64). The majority of patients presented for symptom evaluation (75%) vs. establishing care (25%). The most common presenting symptoms were incontinence (n=18, 30%) and urinary tract infection (UTI) (n=15, 25%). Patients who had documented prior urologic evaluation were assessed for the interval to presentation (n=53). Patients were classified as having their last evaluation within the preceding 12 months (n=23, 43.3%), between 12 and 24 months (n=17, 32%), between 2 and 5 years (n=11, 20.8%) or greater than 5 years prior (n=2, 3.8%). Patients were significantly more likely to present within 12 months of their last evaluation if they were symptomatic (p=0.022). Patients presenting more than one year from their last evaluation were more likely to have DO (p=0.0215), though neither altered compliance nor DESD were associated with delay in diagnosis. As seen with children, the UDS diagnosis of impaired compliance was significantly associated with abnormal imaging findings (p=0.0328). Overall, 42% of this cohort required intervention following referral, and urologic workup including urodynamics altered clinical management in 58.9% of patients. CONCLUSION: Spina Bifida patients continue to require close surveillance into adulthood, and this evaluation must include urodynamic testing. Additionally, there is indication that patients who delay care are more likely to have UDS abnormalities that might necessitate changes in management strategies. We advocate follow-up of less than 12 months between adult urology clinics or within one year after pediatric surveillance has terminated.