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Study design Cross sectional. Objectives To identify variables associated with severe bowel symptoms in spinal cord injured people. Setting National cohort. Methods Adult spinal cord injured (SCI) people were recruited for an online registry and 1373 were included for analysis. Univariate analysis and logistic regression was used to evaluate associations between severity of bowel symptoms and variables. Bowel symptoms were assessed by the Neurogenic Bowel Dysfunction (NBD) score and patients scoring ≥14 were categorized as having severe bowel symptoms. Autonomic dysreflexia (AD) severity was measured using a six item questionnaire and reported as total AD score (0-24). Bladder management was categorized as: voiding, clean intermittent catheterization (CIC), surgery (augmentation/diversion) or indwelling catheter. Results Severe bowel symptoms were reported in 570 (42%) On multivariable logistic regression, every point increase of AD total score was associated with 5% increased odds of having more severe bowel symptoms [OR 1.05 95% CI 1.03-1.10]. Type of bladder management was also associated with more severe symptoms (p = 0.0001). SCI people with indwelling catheters (OR = 2.16, 95% CI 1.40-3.32) or reconstructive surgery (OR = 1.79, 95% CI 1.08-3.32) were almost twice as likely to report more severe bowel symptoms than those performing CIC.

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. METHODS We performed a cross-sectional analysis of data collected as part of the multicenter, prospective Neurogenic Bladder Research Group Spinal Cord Injury (SCI) Registry. Outcomes were: Neurogenic Bladder Symptom Score (NBSS), Neurogenic Bladder Symptom Score Satisfaction (NBSS-Satisfaction), and SCI-QoL Bladder Management Difficulties (SCI-QoL Difficulties). Adjusted multiple linear regression models were used with variables including demographic, injury characteristics, and the following psychosocial HRQoL measures; SCI-QoL Pain Interference (Pain), SCI-QoL Independence, and SCI-QoL Positive Affect and Well-being (Positive Affect). Psychosocial variables were sub-divided by tertiles for the analysis. RESULTS There were 1479 participants, 57% had paraplegia, 60% were men, and 51% managed their bladder with clean intermittent catheterization. On multivariate analysis, higher tertiles of SCI-QoL Pain were associated with worse bladder symptoms, satisfaction, and bladder management difficulties; upper tertile SCI-QoL Pain (NBSS 3.8, p

Prospective qualitative study using semi-structured, open-ended interviews. To better understand psychosocial aspects of bladder management after spinal cord injury (SCI). People with SCI, recruited through three tertiary care centres in North America. Thirty-four community-dwelling individuals with SCI were selected using purposive sampling to ensure men and women with both tetraplegia and paraplegia were represented. The interviews were audio recorded and transcribed. NVivo software was used to code psychosocial domains, medical complications, and methods of bladder management. A qualitative interpretive approach was used, and four participants participated in a debrief session to review the study findings. The median age was 49 (IQR 40–62) years and 61% (21/34) were male. Most had complete injuries (AIS A, 47%, 16/34), and most had a cervical lesion (56%, 19/34). There was a large range of time living with a SCI (median 20 years, IQR 9–31), and most participants managed their bladder with intermittent catheterisation (67% 23/34). The five most common psychosocial domains were anxiety (often in the context of urinary infections, incontinence, or not being able to catheterise), loss of control (due to irregular bladder behaviour), and embarrassment (from incontinence occurring in public); the domains of confidence and independence/planning included both positive and negative examples of bladder management experiences. This study demonstrated consistent psychosocial topics related to bladder management in people living with SCI. This information will help counsel people regarding bladder management and identify areas for education and optimisation of bladder function from a psychosocial perspective.

Cross-sectional survey of the Neurogenic Bladder Research Group (NBRG) registry; a multicenter prospective observation study. To assess how patient-reported urinary tract infections (PRUTIs) in spinal cord injury (SCI) affect quality of life (QOL). Multiple United States hospitals. 1479 participants with SCI were asked about neurogenic bladder-related QOL. Eligibility: age ≥ 18 years with acquired SCI. PRUTI frequency over the last year was classified as 0, 1–3, 4–6, or >6. Four UTI QOL domains were assessed: (1) UTIs limited daily activities, (2) UTIs caused increased muscle spasms, (3) UTIs would not go away, and (4) UTIs made me avoid going out. Multivariable regression identified variables associated with poor QOL. PRUTI frequency was 0 in 388 patients (26%), 1–3 in 677 (46%), 4–6 in 223 (15%), and more than 6 in 190 (13%). Increasing PRUTI rate was independently associated with worse QOL for all four questions. Compared with those with 0 PRUTIs, participants reporting >6 were more likely to limit daily activities (OR 9.0 [95% CI 8.1–21.2] p

Cross sectional.To identify variables associated with severe bowel symptoms in spinal cord injured people.National cohort.Adult spinal cord injured (SCI) people were recruited for an online registry and 1373 were included for analysis. Univariate analysis and logistic regression was used to evaluate associations between severity of bowel symptoms and variables. Bowel symptoms were assessed by the Neurogenic Bowel Dysfunction (NBD) score and patients scoring ≥14 were categorized as having severe bowel symptoms. Autonomic dysreflexia (AD) severity was measured using a six item questionnaire and reported as total AD score (0-24). Bladder management was categorized as: voiding, clean intermittent catheterization (CIC), surgery (augmentation/diversion) or indwelling catheter.Severe bowel symptoms were reported in 570 (42%) On multivariable logistic regression, every point increase of AD total score was associated with 5% increased odds of having more severe bowel symptoms [OR 1.05 95% CI 1.03-1.10]. Type of bladder management was also associated with more severe symptoms (p = 0.0001). SCI people with indwelling catheters (OR = 2.16, 95% CI 1.40-3.32) or reconstructive surgery (OR = 1.79, 95% CI 1.08-3.32) were almost twice as likely to report more severe bowel symptoms than those performing CIC.

Cross-sectional survey of the Neurogenic Bladder Research Group (NBRG) registry; a multicenter prospective observation study.To assess how patient-reported urinary tract infections (PRUTIs) in spinal cord injury (SCI) affect quality of life (QOL).Multiple United States hospitals.1479 participants with SCI were asked about neurogenic bladder-related QOL. Eligibility: age ≥ 18 years with acquired SCI. PRUTI frequency over the last year was classified as 0, 1-3, 4-6, or6. Four UTI QOL domains were assessed: (1) UTIs limited daily activities, (2) UTIs caused increased muscle spasms, (3) UTIs would not go away, and (4) UTIs made me avoid going out. Multivariable regression identified variables associated with poor QOL.PRUTI frequency was 0 in 388 patients (26%), 1-3 in 677 (46%), 4-6 in 223 (15%), and more than 6 in 190 (13%). Increasing PRUTI rate was independently associated with worse QOL for all four questions. Compared with those with 0 PRUTIs, participants reporting6 were more likely to limit daily activities (OR 9.0 [95% CI 8.1-21.2] p 0.0001), experience increased muscle spasms (OR 12.4 [95% CI 7.5-20.6] p 0.0001), perceive a UTI would not go away (OR 30.1 [95% CI 15.0-60.4] p 0.0001), and avoid going out because of UTIs (OR 7.2 [95% CI 4.2-12.4] p 0.0001).An increasing rate of PRUTIs is independently associated with worse QOL. Thorough evaluation and treatment may improve QOL in this population.

The Neurogenic Bladder Research Group (NBRG) registry is a multicenter prospective observational study. This manuscript is retrospective based on a cross-sectional survey. 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. Multiple hospitals across the United States. Eligibility included: age > 18 years and acquired SCI. Over 1.5 years, 1479 eligible participants were enrolled. We excluded those with surgical reconstruction or diversion of the bladder. In total, 1282 participants were grouped by bladder management: (1) indwelling catheter (IDC), (2) clean intermittent catheterization (CIC), (3) external devices (pads/condom), and (4) volitional voiding (Void). UTI frequency was classified as 0, 1–3, 4–6, or > 6 over the prior year. UTI severity was determined by hospitalization for UTI in the prior year. Multivariate regression compared these factors across groups. UTIs were least frequent in Void followed by pads/condom, CIC, and IDC (all p ≤ 0.001). UTI severity followed a similar pattern. Controlling for covariates, the adjusted odds of UTI frequency (Void = reference) were 2.28 (1.38–3.76) for pads/condom, 3.42 (2.25–5.18) for CIC, and 4.3 (2.59–6.70) for IDC (all p ≤ 0.001). Patient subjective assessment of UTI frequency is highest with IDC, followed by CIC, pads/condom, and lowest with spontaneous voiding. The odds of hospitalization for UTI were three times higher for IDC than spontaneous voiding. UTI risk should be considered when counseling patients about bladder management options. These associations do not imply causation but warrant further investigation in a prospective manner. Patient-Centered Outcomes Research Institute (PCORI) Award (CER14092138).

Prospective cross-sectional study. Validate the Neurogenic Bladder Symptom Score (NBSS) for people with spinal cord injury (SCI). United States (recruitment from community/tertiary neurourology clinics). We used data from a prospective observational study of people with a SCI who enrolled during December 2015–September 2016. Participants completed the NBSS and other measurement tools (SF-12 and SCI-QOL Bladder Management Complications tool). Data were used to determine the internal consistency (Cronbach’s alpha), validity (hypothesis testing), and test–re-test reliability (using an intraclass correlation coefficient). 609 people with a SCI had complete data. The median NBSS total score was 22 (IQR 15–30), and median quality of life was “mixed”. The Cronbach’s alpha of the total and the incontinence, storage/voiding, and consequences domains was 0.85, 0.93, 0.76, and 0.49 respectively. All item to domain correlations were ≥0.3, aside from 3/7 of the items from the consequences domain. Appropriate correlations between the NBSS domains and external variables and other questionnaires were observed, such as a moderate correlation between the SCI-QOL Bladder Management complications tool and the NBSS total score. For the reliability assessment, 174 people had 3 month followup data and did not have a significant change to their urologic health. The intraclass correlation coefficients were >0.75 for all subdomains and the overall score. The NBSS demonstrated good validity and reliability in a large cohort of people with a SCI, and is a suitable tool to assess neurogenic bladder symptoms. Patient-Centered Outcomes Research Institute (PCORI) Award CER14092138.