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Urinary continence after reconstructive continence surgery in the National Spina Bifida Patient Registry
Evalyn Ione George, MD1, Tiebin Liu, BS2, Alexandra Borden, PA-C1, David I. Chu, MD3, Douglass B. Clayton, MD4, Micah A. Jacobs, MD5, Maryellen Kelley, DNP, CPNP, MHSc1, Konrad M. Szymanski, MD6, John S. Wiener, MD1, Jonathan C. Routh, MD1.
1Duke University Hospital, Durham, NC, USA, 2CDC, HHS, Washington, DC, DC, USA, 3Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA, 4Monroe Carell Jr. Children’s Hospital, Vanderbilt University, Nashville, TN, USA, 5University of Texas-Southwestern, Dallas, TX, USA, 6Riley Children’s Hospital, Indiana University, Indianapolis, IN, USA.
BACKGROUND: Neurogenic bladder and urinary incontinence in individuals with spina bifida (SB) impacts morbidity and quality of life. While the goal for many patients is urinary continence, this is not always achieved, even with reconstructive continence surgery. Prior studies show variation in reconstructive continence surgery and outcomes across institutions, but the reasons are unclear. We hypothesized that urinary continence rates vary by sociodemographic and clinical factors.
METHODS: We analyzed 2009-2024 data of individuals ≥5 years of age from the National Spina Bifida Patient Registry (NSBPR), which collects annual data on participants receiving care at SB specialty clinics across the United States. The exposure was history of reconstructive urinary continence surgery (continent procedures e.g. appendicovesicostomy or augmentation cystoplasty, or incontinent procedures e.g. vesicostomy). The outcome was urinary continence at each visit, defined as less than one incontinent episode per month. Covariates included age group at time of visit (children 5-12, adolescents 13-17, young adults 18-26, and older adults ≥27 years), sex, race/ethnicity, insurance, SB type (myelomeningocele vs. non-myelomeningocele), lesion level (thoracic, lumbar, or sacral), mobility status (community, household, therapeutic, or non-ambulators), bladder management (none/Crede, volitional void, or clean intermittent catheterization), history and number of reconstructive continence surgery, history of ventriculoperitoneal shunt, and clinic site. Generalized estimating equation (GEE) models adjusted for repeated measures and covariates. Odds ratios (OR) and 95% confidence intervals (CI) were estimated to assess associations between covariates and outcomes.
RESULTS: Of 9,933 eligible participants, 2,545 underwent surgery: 1,879 had only continent reconstruction, 341 had only incontinent reconstruction, and 325 had both at different times during the study period. Among study patients at the last visit with non-missing continence status, 3,981 (41.1%) were continent. Continence was more common among reconstructive surgery patients 1,012/2,135 (47.4%), compared to those without surgery 2,936/7,206 (40.7%) (p=0.0001). The highest proportion of continence were in patients whose surgical history was continent reconstruction only (47.3%), or most recently continent reconstruction (49.4%). However, there was no surgical intervention that resulted in greater than 50% of patients being continent. In multivariable GEE model, continence was independently associated with all clinical factors with the exception of history of ventriculoperitoneal shunt, and all sociodemographic factors. Those with a history of reconstructive continence surgery, had higher odds of being continent compared with those without such surgery (OR = 1.57, 95% CI: 1.34-1.84, p<0.0001). Additionally, each additional reconstructive continence surgery was associated with increased odds of continence (OR=1.22, 95% CI: 1.13-1.32, p<0.0001).
CONCLUSIONS:Proportions of urinary continence and reconstructive surgeries vary, though most patients are still not continent despite undergoing continent reconstructive surgery. Among NSBPR participants, continence outcomes are associated with reconstructive interventions, as well as a wide variety of clinical and sociodemographic factors.
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