Growing Up With Neurogenic Bladder: Navigating the Challenges and Controversies in Pediatric to Adult Transition and Lifelong Care: A Report From the Neurogenic Bladder Research Group (NBRG).

Objective: Young adults with spina bifida (and other congenital neurologic diseases) have their own aspirations that may include education, employment, relationships and having children. As they move from pediatric to adult care, they must eventually transition to an adult healthcare team. The objective of this paper is to review the challenges and controversies in the transitional and adult care of people with congenital neurourological diseases.

Identifying Bladder Phenotypes After Spinal Cord Injury With Unsupervised Machine Learning: A New Way to Examine Urinary Symptoms and Quality of Life.

Purpose: Patients with spinal cord injuries (SCIs) experience variable urinary symptoms and quality of life (QOL). Our objective was to use machine learning to identify bladder-relevant phenotypes after SCI and assess their association with urinary symptoms and QOL.

Materials And Methods: We used data from the Neurogenic Bladder Research Group SCI registry.

Bladder management is the top health concern among adults with a spinal cord injury.

Introduction And Objective: Individuals with spinal cord injury (SCI) commonly experience secondary complications though it is not known how they prioritize these different health domains. Using the Neurogenic Bladder Research Group (NBRG) SCI registry, our objective was to identify the top health concerns of individuals with SCI and identify factors that may be associated with these choices with particular focus on urologic issues that participants face.

Methods: Participants in the NBRG registry were asked: "What are the top 3 problems that affect you on a daily basis?" Urinary symptoms and QoL were assessed with the Neurogenic Bladder Symptom Score (NBSS).

Sex Differences in Bladder Management, Symptoms, and Satisfaction After Spinal Cord Injury.

Purpose: We sought to characterize sex-stratified differences in bladder management and bladder symptoms and satisfaction after spinal cord injury.

Materials And Methods: This study was a prospective, cross-sectional, observational study; eligibility included: age ≥18 years and acquired spinal cord injury. Bladder management was grouped as (1) clean intermittent catheterization, (2) indwelling catheter, (3) surgery, and (4) voiding.

Differences in the incidence of urinary tract infections between neurogenic and non-neurogenic bladder dysfunction individuals performing intermittent catheterization.

Purpose: To measure the incidence and severity of urinary tract infections (UTI) in intermittent catheter (IC) users with neurogenic and non-neurogenic diagnoses.

Materials And Methods: Administrative health insurance claims data from the IBM MarketScan® Database between January 1, 2015 and  December 31, 2019, were analyzed. New IC-users with neurogenic lower urinary tract dysfunction (NLUTD); IC-users without NLUTD (non-NLUTD); and age-and-sex-matched general population without IC use (GEN) were compared.

Association of stone surgery with patient-reported complications after spinal cord injury.

Aims: To determine if a history of urinary stone surgery in individuals with spinal cord injury (SCI) is associated with an increased incidence of SCI-related complications and lower quality of life (QOL).

Methods: The Neurogenic Bladder Research Group (NBRG) registry is a multicenter, prospective, observational study which measures QOL after acquired SCI. Over 1.

Factors impacting bowel symptoms in a contemporary spinal cord injury cohort: results from the Neurogenic Bladder Research Group Registry.

Study Design: Cross sectional.

Objectives: To identify variables associated with severe bowel symptoms in spinal cord injured people.

Setting: National cohort.

Patient Reported Shared Decision Making in Urology from the Surgical Consumer Assessment of Healthcare Providers and Systems (CAHPS) Survey.

Introduction: Shared decision making balances the best available evidence with patients' preferences and values in order to make a medical decision. The use of shared decision making and its link to clinically meaningful outcomes are not well described in urology. We report the rates of shared decision making among patients undergoing urological surgery, and explore the relationship between shared decision making and patient reported surgeon ranking.

Psychosocial aspects of health-related quality of life and the association with patient-reported bladder symptoms and satisfaction after spinal cord injury.

Study Design: Prospective, multi-centered, observational.

Objectives: To characterize the relationship between psychosocial aspects of health-related quality of life (HRQoL) and patient-reported bladder outcomes.

Setting: Multi-institutional sites in the United States, cohort drawn from North America.

Self-Reported Urological Hospitalizations or Emergency Room Visits in a Contemporary Spinal Cord Injury Cohort.

Purpose: Individuals with spinal cord injuries frequently use urgent and emergent medical care. We hypothesized that urological causes are a primary driver of hospitalizations/emergency room visits in a contemporary spinal cord injury cohort.

Materials And Methods: The Neurogenic Bladder Research Group spinal cord injury registry is a prospective cohort study evaluating neurogenic bladder related quality of life after traumatic spinal cord injury.

The Role of Health Insurance in Patient Reported Satisfaction with Bladder Management in Neurogenic Lower Urinary Tract Dysfunction Due to Spinal Cord Injury.

Purpose: Neurogenic lower urinary tract dysfunction is a significant source of morbidity for individuals with spinal cord injury and is managed with a range of treatment options that differ in efficacy, tolerability and cost. The effect of insurance coverage on bladder management, symptoms and quality of life is not known. We hypothesized that private insurance is associated with fewer bladder symptoms and better quality of life.

Contemporary multicenter outcomes of continent cutaneous ileocecocystoplasty in the adult population over a 10-year period: A Neurogenic Bladder Research Group study.

Aims: Evidence is sparse on the long-term outcomes of continent cutaneous ileocecocystoplasty (CCIC). We hypothesized that obesity, laparoscopic/robotic approach, and concomitant surgeries would affect morbidity after CCIC and aimed to evaluate the outcomes of CCIC in adults in a multicenter contemporary study.

Methods: We retrospectively reviewed the charts of adult patients from sites in the Neurogenic Bladder Research Group undergoing CCIC (2007-2017) who had at least 6 months of follow-up.

Frequency of patient-reported UTIs is associated with poor quality of life after spinal cord injury: a prospective observational study.

Study Design: Cross-sectional survey of the Neurogenic Bladder Research Group (NBRG) registry; a multicenter prospective observation study.

Objectives: To assess how patient-reported urinary tract infections (PRUTIs) in spinal cord injury (SCI) affect quality of life (QOL).

Setting: Multiple United States hospitals.

The creation and validation of a short form of the Neurogenic Bladder Symptom Score.

Aim: To develop a short form (SF) of the 24-item Neurogenic Bladder Symptom Score (NBSS).

Methods: We used three previously published datasets. First, we selected the most responsive questions within each of the domains.

Reasons for cessation of clean intermittent catheterization after spinal cord injury: Results from the Neurogenic Bladder Research Group spinal cord injury registry.

Introduction: Clean intermittent catheterization (CIC) is recommended for bladder management after spinal cord injury (SCI) since it has the lowest complication rate. However, transitions from CIC to other less optimal strategies, such as indwelling catheters (IDCs) are common. In individuals with SCI who stopped CIC, we sought to determine how individual characteristics affect the bladder-related quality of life (QoL) and the reasons for CIC cessation.

Erectile dysfunction management after failed phosphodiesterase-5-inhibitor trial: a cost-effectiveness analysis.

Background: To evaluate the cost-effectiveness of alternate erectile dysfunction (ED) management options after failed first line phosphodiesterase-5-inhibitors (PDE5-I).

Methods: An empiric, repetitive decision tree analysis model was constructed using literature review and expert clinical judgement. This assessed the expected costs and quality adjusted life years (QALYs) of decision alternatives over a 10-year period.

Population dynamics of an Escherichia coli ST131 lineage during recurrent urinary tract infection.

Recurrent urinary tract infections (rUTIs) are extremely common, with ~ 25% of all women experiencing a recurrence within 1 year of their original infection. Escherichia coli ST131 is a globally dominant multidrug resistant clone associated with high rates of rUTI. Here, we show the dynamics of an ST131 population over a 5-year period from one elderly woman with rUTI since the 1970s.

Validation of Upper Extremity Motor Function as a Key Predictor of Bladder Management After Spinal Cord Injury.

Objective: To validate if better upper extremity (UE) motor function predicts clean intermittent catheterization (CIC) adoption and adherence after spinal cord injury (SCI) using a validated instrument (as opposed to prior research using scales based on expert opinion).

Design: We examined data from the Neurogenic Bladder Research Group SCI registry, a multicenter, prospective, observational study assessing persons with neurogenic bladder following SCI. All participants who were unable to volitionally void and were >1 year post injury were included.

Patient Reported Bladder Related Symptoms and Quality of Life after Spinal Cord Injury with Different Bladder Management Strategies.

Purpose: Neurogenic bladder significantly impacts individuals after spinal cord injury. We hypothesized that there would be differences in bladder related symptoms and quality of life for 4 common bladder management methods.

Materials And Methods: In this prospective observational study we measured neurogenic bladder related quality of life after spinal cord injury.

Predictors of low urinary quality of life in spinal cord injury patients on clean intermittent catheterization.

Objective: Clean intermittent catheterization (CIC) is a preferred method of bladder management for many patients with spinal cord injury (SCI), but long-term adherence is low. The aim of this study is to identify factors associated with low urinary quality of life (QoL) in SCI adults performing CIC.

Methods: Over 1.

Patient subjective assessment of urinary tract infection frequency and severity is associated with bladder management method in spinal cord injury.

Study Design: The Neurogenic Bladder Research Group (NBRG) registry is a multicenter prospective observational study. This manuscript is retrospective based on a cross-sectional survey.

Objectives: To assess patient subjective assessment of urinary tract infection (UTI) frequency and severity are associated with the degree of use of catheters or incontinence products.

The effects of augmentation cystoplasty and botulinum toxin injection on patient-reported bladder function and quality of life among individuals with spinal cord injury performing clean intermittent catheterization.

Aims: Clean intermittent catheterization (CIC) is recommended after spinal cord injury (SCI) because it has the least complications, however, CIC has a high discontinuation rate. We hypothesized that bladder botulinum toxin injection or augmentation cystoplasty may improve satisfaction with CIC.

Methods: The NBRG registry is a multicenter, prospective, observational study asking SCI participants about neurogenic bladder (NGB) related quality of life (QoL).

Efficacy of Pressure Regulating Balloon Exchange in Men With Post Artificial Urinary Sphincter Persistent or Recurrent Stress Urinary Incontinence.

Objective: To assess the efficacy of exchanging the pressure regulating balloon (PRB) to 71-80 cm HO in patients with persistent or recurrent stress urinary incontinence (SUI) following artificial urinary sphincter (AUS) placement.

Methods: Patients with SUI following AUS placement who underwent PRB replacement between 2011 and 2017 in the absence of urethral cuff malfunction, atrophy, stricture, or erosion were reviewed. Primary outcomes included changes in pad per day (PPD), Incontinence Symptom Index score, and Incontinence Quality of Life (I-QOL).