Role of Mobility and Voiding Function on Quality of Life Among Individuals With Caudal Regression Syndrome

Document Type

Conference Proceeding

Publication Date

5-2025

Publication Title

Journal of Urology

Abstract

INTRODUCTION AND OBJECTIVE: Caudal regression syndrome (CRS) is a rare congenital condition characterized by the partial or complete absence of the caudal vertebrae, significantly impacting patients' mobility and bowel/bladder function. Despite its effects, there is limited understanding of how CRS affects quality of life (QoL) due to a lack of long-term data. This study examines the relationship between mobility, voiding outcomes, and QoL perception in CRS patients. METHODS: CRS patients or their primary caregivers (if under 18) completed a questionnaire administered by the International Sacral Agenesis/Caudal Regression Association. Mobility outcomes included independence þ/- assistive devices (e.g. wheelchair, crutches), satisfaction with mobility, and ability to get around the neighborhood. Voiding outcomes included bladder infections within the last year, independence in bladder routine, catheterization, and bowel incontinence. Variables were chosen based on completeness (< 50% missing data) and relevance to QoL. Variables were cross-tabulated with patient reported QoL (poor to excellent). Fisher’s exact tests assessed associations between each variable and QoL, with alpha set at 0.05. RESULTS: Of 74 individuals who met inclusion criteria, most rated their QoL "very good" (45.9%) or “excellent” (20.3%). Most reported independent mobility with assistive devices (40.5%), satisfaction with mobility (48.6%), and neighborhood mobility (45.6%). For voiding outcomes, 56.9% had< 2 bladder infections, 52.1% were independent in bladder routine, 56.9% were not catheterizing, and 61.3% had bowel incontinence. QoL was significantly associated with mobility satisfaction (p=0.004, Table 1) and neighborhood mobility (p=0.001, Table 1). No significant associations were found between QoL and mobility method or bladder/bowel outcomes. CONCLUSIONS: This database comprises one of the largest cohorts studied of patients with this rare condition. Our findings suggest that QoL in CRS patients is associated with personal mobility satisfaction and ability to navigate the neighborhood but not with the type of mobility method. This may guide future quality improvement initiatives to support multidisciplinary strategies to enhance mobility for CRS patients.

Volume

213

Issue

5S

First Page

e1074

Last Page

e1075

Comments

American Urological Association Annual Meeting, April 26-29, Las Vegas, NV

DOI

10.1097/01.JU.0001110096.43556.42.29

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