Longitudinal Study of Bladder Continence in Patients with Spina Bifida in the National Spina Bifida Patient Registry

Abstract

Purpose Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida. Materials and Methods We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. Results This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7–2.1 and 3.8, 3.2–4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with non-myelomeningocele (adjusted OR 2.8). Conclusions In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.

The National Spina Bifida Patient Registry: A Decade's journey

“…MMC was the most common diagnosis (81.5%; Thibadeau, ). From the inception of the NSBPR, there have been challenging issues in the interpretation of some particular registry variables (e.g., differences across sites in definitions bowel and bladder continence); thus, as the registry has evolved, the enquiry points have been refined and expanded (Liu et al, ). Accordingly, there has been a focus on detection of variations in care across registry centers providing an opportunity for several centers to evaluate outcomes related to treatments.…”

“…Liu et al () reported on the status of bladder continence through time and its associated factors. At last follow‐up, 22.4% of participants had undergone surgery for bladder continence and 45.8% reported bladder continence.…”

“…Researchers found that the likelihood of bladder continence was significantly greater in those who had a non‐MMC diagnosis, had a lower level of lesion, had a higher mobility level, were older, female, non‐Hispanic white, and had private insurance. Additionally, the history of surgery for continence and bladder management (i.e., spontaneous void with or without Credé maneuver, clean intermittent catheterization, condom catheter, indwelling catheter, vesicostomy, urostomy bag, or medication use) were also associated with continence independent of all other factors (Liu et al, ).…”

“…In the NSBPR publications, as documented in their methods' sections, the variable of continence on the data collection tool was defined as answering “yes” to the question regarding being “dry” for bladder and “no involuntary stool leakage” for bowel “with or without intervention, during the day” from the beginning of the registry until October 2013 (Freeman et al, ; Liu et al, ). Beginning in October 2013, continence was quantified by inquiring about bladder continence during the day, and during the previous month (when not having a urinary tract infection) and bowel continence during the day, and during the previous month (when not ill).…”

“…Beginning in October 2013, continence was quantified by inquiring about bladder continence during the day, and during the previous month (when not having a urinary tract infection) and bowel continence during the day, and during the previous month (when not ill). Data were reported using a multiple choice format; those who answered never having incontinence or incontinence less than once per month were considered continent for some NSBPR studies (Liu et al, ; Wiener et al, ). In addition, data on continence often took into account age (≥5 years) and bowel/bladder “impairment” (frequently defined as those who were using a management technique or intervention) (Freeman et al, ; Sawin et al, ).…”