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Exploring the relationship between self-reported urinary tract infections to quality of life and associated conditions: insights from the spinal cord injury Community Survey


Study Design

Descriptive study


Urinary tract infections (UTIs) are one of the most frequent types of infections following spinal cord injury (SCI). Here we assess the relationship between frequency of UTIs and activity level/overall quality of life (QOL) measures, determine the frequency of temporally associated conditions associated with UTI and identify factors associated with frequent UTIs.




The Spinal Cord Injury Community Survey was developed to assess major dimensions of community living and health outcomes in persons with chronic SCI in Canada. Participants were stratified by self-reported UTI frequency. The relationship between UTI frequency and QOL, health resource utilization, and temporally associated conditions were assessed. Results were analysed with cross tabulations, χ2 tests, and ordinal logistic regression.


Overall 73.5% of participants experienced at least one self-reported UTI since the time of injury (mean 18.5 years). Overall QOL was worse with increasing frequency of these events. Those with frequent self-reported UTIs had twice as many hospitalizations and doctors’ visits and were limited in financial, vocational and leisure situations, physical health and ability to manage self-care as compared with those with no UTIs. Self-reported UTIs were associated with higher incidence of temporally associated conditions including bowel incontinence, constipation, spasticity, and autonomic dysreflexia. Individuals who were younger and female were more likely to have frequent UTIs and those with constipation and autonomic dysreflexia had worse QOL.


Higher frequency self-reported UTIs is related to poor QOL of individuals with long-term SCI. These findings will be incorporated into SCI UTI surveillance and management guidelines.


There has been increasing global awareness of the consequences of living with spinal cord injury (SCI). The World Health Organization (WHO) found SCI to be a “devastating condition” associated with consequences that “at worst lead to premature death and at best lead to social isolation” ( Urinary tract infections (UTIs) are regarded as the most frequent urologic complication following traumatic SCI [1, 2]. They are experienced by 90% of this population in their lifetime ( Their frequency and consequences also lead to a significant cost to the healthcare system [3, 4]; in the US ~$4 billion dollars from 2006 to 2015 [5].

Typical symptoms of a lower urinary tract infection include dysuria, frequency and urgency. Patients with SCI and active UTIs who are sensate may exhibit these symptoms; whereas those who lack sensory cues from the bladder may have atypical symptoms (i.e., spasticity, autonomic dysreflexia (AD), fever, or renal impairment) [6].

Several pathophysiologic mechanisms are proposed for UTI development in the SCI population including urinary stasis due to neurogenic bladder, which in turn promotes bacterial colonization and impairs the phagocytic ability of epithelial cells that line the urinary bladder [7]. Other factors include recent antibiotic use, hospitalization during the last year, prior UTI history, invasive procedures without antibiotic prophylaxis, cervical injury, and chronic catheterization [1, 8]. There are also inherent immunologic alterations in the bladder after SCI [9]. Importantly, UTI in SCI can lead to pyelonephritis and urosepsis or other temporally associated conditions including bowel incontinence, constipation, spasticity, and AD [10]. The latter is known to contribute to further morbidity, has an associated risk of mortality [11] and can sometimes be unrecognized in the ER setting upon first presentation for these individuals [12].

Furthermore, clinicians who are unfamiliar with SCI pathophysiology may diagnose a UTI on the basis of a positive urine culture or urinalysis due to colonization in an SCI patient with atypical presentation, when in fact their symptoms may be reflective of a different pathology such as pneumonia or decubitus ulcer cellulitis. This can lead to misdiagnosis, overuse of antibiotics, bacterial resistance, poor antibiotic stewardship, and considerable expense to the healthcare systems.

Recently the WHO has acknowledged the challenges in conducting SCI research and they have called for national agencies to provide accurate information to be gathered in this small population ( In this regard, the Spinal Cord Injury Community Survey (SCISC) was developed with the goal to portray the life situation of people with SCI living in the community [13].

This study is the first report from the SCISC dataset addressing self-reported UTIs in an SCI population dataset. Our objective was to use this survey data to examine the influence of UTIs on the daily living of individuals with SCI in Canada. Specifically we aimed to: (1) assess impact of UTI based on self-report on activity level/quality of life (QOL) measures; (2) determine the frequency of temporally associated conditions associated with UTI and their relationship to QOL; and (3) identify demographic and injury factors associated with frequent reporting of UTIs. This information will aid us in creating surveillance and management guidelines for individuals with SCI and UTIs which are self-reported.


Hypothesis and outcomes measured

We hypothesize that individuals who reported a higher incidence of UTIs have proportionally worse QOL measures. The primary outcome evaluated in this study is the relationship between UTI frequency based on self-report and activity level/QOL measures. We also evaluated temporally associated conditions and their frequency related to the frequency of self-reported UTIs and QOL measures and relationships between frequency of UTI based on self-reported frequency and a healthcare system usage.

SCI Community Survey

The SCI Community Survey includes Canadian men and women with SCI living in the community for at least 1 year after being discharged from a hospital or rehabilitation facility post injury. These data are considered important as they are the first survey documenting the experiences of a large group of individuals living with SCI in the community setting (n = 1549). It is also among the first internationally to obtain a comprehensive understanding of major aspects of their lives [13]. Individuals were eligible if they had an SCI, were 18 years of age or older, and could speak English or French. The survey collected self-reported data on several domains including demographic, the SCI health questionnaire (UTI symptoms are one of 11 collected) [14], SCI related needs measure, community participation, healthcare utilization (Canadian Community Health Survey) [15], and overall heath rating. QOL was assessed with the widely-used LiSAT-11 [13] and SF-12 questionnaires [16].

Participant recruitment and data collection

Participants first reviewed and electronically signed their informed consent after which they received email confirmation with a link to the survey. This dataset has been used for research previously, and has been described in a prior publication [13, 17]. All SCISC data were collected via an online site (the Mustel Group (, a market research organization with experience conducting only surveys) using measures previously developed [13, 16, 17]. Data were acquired between May 2011 and August 2012. Participants with multiple entries, incomplete informed consent, or incomplete records were excluded. Data were checked and cleaned; 96% of participants had consistent answers. When secondary questions were not applicable they were skipped and the observation was recorded as not applicable. The database is stored on secure servers and its utilization is strictly controlled via a data-sharing agreement with the survey investigators.

Data analysis

Demographic data and injury characteristics

Participant age at time of completing the survey, sex, ethnic origin (white vs. other), education level (high school or higher vs. other), living setting (own home vs. other), and household income (</>$40,000 CAD) were included in analysis.

Time from injury to survey completion, cause of injury (transport, falls, sports, other traumatic, and nontraumatic e.g., tumor, congenital, degenerative), and neurological severity (American Spinal Injury Association Injury Scale (ASIA) ranges from ASIA A (most severe) to D (least severe)) and level of injury (paraplegia/tetraplegia)). Participants were asked several questions regarding their function and sensation which were coded as paraplegia ASIA A/B/C, tetraplegia A/B/C, and ASIA D using a clinically developed algorithm.

Outcome measures

Participants were asked in the survey if they had experienced a UTI in the past 12 months, and if so, how many, which were grouped as 0, 1–2, and 3+ for analysis. Health resource utilization was assessed by asking participants if they had visited their family physician, a urologist, and if they were hospitalized overnight in the last 12 months. Whether or not the participant experienced other temporally associated conditions related to UTI were identified, including bowel incontinence, constipation, spasticity, and AD [9]. Participants were asked to rate the following aspects of life satisfaction: vocational situation, financial situation, leisure situation, contact with friends and acquaintances, sexual life, ability to manage self-care, family life, partner relationship, physical and psychological health, and life as a whole. Responses were dichotomized as unsatisfactory (very dissatisfying, dissatisfying, rather dissatisfying) and satisfactory (rather satisfying, satisfying, very satisfying).

Statistical analysis

Statistical analysis was performed using descriptive statistics for participant characteristics. Categorical and dichotomous variables were presented as frequency (%), whereas continuous variables were presented as mean ±  SD. Participants were divided based on presence (one or more) or absence (zero) of self-reported UTIs or by frequency of UTIs (zero to three or more), 95% confidence intervals were reported for each group. A χ2 test (Fisher’s Exact Test when the expected cell counts were less than five) was used to determine statistical significance between groups. A multivariable analysis utilizing ordinal logistic regression was used to examine the predictors of QOL.


Demographics and incidence of self-reported UTIs

There were 1529 SCI participants in the dataset; 67.3% were male, with a mean age of 49.5 (±13.9) years (Table 1). The mean time from injury was 18.5 (±14.2) years inferring that this is a population with chronic SCI (Table 1). Of the 1529 participants, 405 (26.5%) reported none, 891 (58.2%) reported one to two, and 233 (15.2%) reported having three or more UTIs per year.

Table 1 Participant and injury characteristics

Self-reported UTIs were associated with younger age at time of survey completion (p < 0.0001), female sex (p = 0.008), and longer time from injury (p = 0.0090, Table 1). There was no significant difference in ethnic origin, education, or living setting.

Injury characteristics and UTI Reporting

The majority of the cohort had a history of SCI due to a transport traumatic injury (39.0%), fall (15.4%), sports-related (11.5%), other traumatic (5.9%), and nontraumatic (28.2%) e.g., tumor, infection, stroke, degenerative spine, congenital, neurological syndromes, or surgical complications as a cause of SCI. UTIs by self-report were associated with transport aetiology of injury (p < 0.0001; Table 1). The types of injury experienced were 25.5% tetraplegia ASIA A/B/C, 42.5% paraplegia ASIA A/B/C, and 32.0% ASIA D. Individuals with paraplegia ASIA A/B/C reported experiencing UTIs, followed by those with tetraplegia A/B/C, and ASIA D (least severe) injuries (p < 0.0001; Table 1, Supplementary Fig. 1).

Relationship between reported UTIs on quality of life and overall satisfaction

Overall QOL was significantly worse with increasing frequency of UTI (p = 0.0411, Fig. 1).

Fig. 1
figure 1

Relationship between self-reported UTI and overall quality of life

Individuals who self-reported having three or more UTIs had significantly lower satisfaction with their ability to manage self-care (p < 0.0001), financial situation (p = 0.0267), friends and acquaintances (p = 0.0044), leisure situation (p = 0.0011), physical health (p < 0.0001), psychological health (p = 0.0011), social activity (p = 0.0044), vocational situation (p = 0.0015), and overall satisfaction (p = 0.0015) (Table 2). Individuals self-reporting three or more UTIs per year also indicated they accomplished less than they would like (p < 0.0001) and were less satisfied with life as a whole (p = 0.0015) in comparison to those with no or 1–2 UTIs per year. There was a nonsignificant trend for those reporting frequent UTIs to be less satisfied with their sexual life (p = 0.0549) (Table 2).

Table 2 Satisfaction with aspects of living and quality of life

Interestingly, the group reporting 1–2 UTIs per year reported higher satisfaction with their financial situation, friends and acquaintances, and sexual life than both those who had no UTI or three or more (Table 2). This may be related to differences in demographics and injury characteristics between groups, e.g., a higher income and lower rate of nontraumatic injuries (Table 1).

Temporally associated conditions associated with self-report of UTI

Temporally associated conditions assessed include bowel incontinence, constipation, spasticity, and AD over the last 12 months [9]. Those who had experienced frequent UTIs had significantly higher number of temporally associated conditions (bowel incontinence p < 0.0001, constipation p < 0.0001, spasticity p < 0.0001, and AD p < 0.0001 (Table 3).

Table 3 Relationships between urinary tract infection (UTI) frequency and other temporally associated conditions experienced in the last 12 months

Predictors for poor QOL

In a multivariable analysis, we utilized an ordinal logistic regression to assess for predictors of QOL. We found that temporally associated conditions such as constipation (OR = 0.534, CI = [0.423–0.674], p < 0.0001) and AD (OR = 0.691, CI = [0.563–0.849], p = 0.0004) are significantly associated with poor QOL (Table 4). The presence of UTI did not predict QOL, although there was a trend that having 3+UTIs that reported related complications seemed to predict poor QOL.

Table 4 Multivariate analysis for predictors of quality of life

Relationship between self-reported UTIs on health resource utilization

Resource utilization within the healthcare system by SCI persons reporting frequent UTIs showed a doubling of hospitalizations compared with those with no history of UTI (36.5% vs. 15.3%, p < 0.0001) (Table 5). Physician visits were also higher among persons with SCI reporting frequent UTIs with 82.4% of them visiting a family doctor as compared with 73.8% of those not reporting UTIs (p = 0.011) (Table 5). In this group specialty physician services, specifically in urology, were also significantly more common, as compared with reporting no UTI (53.7% vs. 19.5%, p < 0.0001) (Table 5).

Table 5 Relationship between self-reported urinary tract infections (UTIs) on health resource utilization in the past 12 months


Utilizing the SCISC, we identified a population of individuals having a mean time since SCI injury of 18.5 years. The frequency of self-reporting UTI was substantial with 75% of individuals being affected. These data represent an important source of information; results can be interpreted and applied to a large population of individuals with chronic SCI. This work further supports the WHO’s call for further research into the management of individuals with SCI (

Overall QOL was significantly worsened with higher rates of UTI reported on univariable analysis and there was a trend to an association between 3+ subjective UTIs and poor QOL on multivariable analysis. Other authors have reported SCI itself has a significant impact on QOL and psychosocial well-being [18]. Compounding this we have identified an association between self-reported UTI frequency and worse QOL indicators across multiple domains (except partner satisfaction and sexual life). Furthermore, higher rates of UTI were associated with increased frequency of all temporally associated conditions evaluated (bowel incontinence, constipation, spasticity, and AD). These temporally associated conditions may contribute to decreased QOL; however, it is difficult to identify causality in a survey-based study. Nonetheless, the relationships identified here can be used to model these concepts and help clinicians identify risk factors to better inform patient care for individuals with SCI as exemplified by Rivers et al. [19].

Noonan et al. and others have demonstrated that individuals with SCI who have multiple comorbidities have a substantial impact on healthcare utilization [5, 12, 19,20,21]. Our study further supports this notion with those individuals with a history of UTI by self-report having approximately double the number of hospitalizations than those with no history of UTI. It is not known if having a history of UTI or having temporally associated conditions leads to increased hospitalization as this study can only examine correlations and not causation. None the less, with this information, it provides further systems-based motivation to better inform clinicians caring for this patient population.

Our intent with the multivariable analysis was to identify potential independent variables that most impact those with SCI. Constipation and AD in individuals were significant predictors in this analysis. Constipation is a modifiable factor through education and medical treatments (i.e., laxatives, increased fluid intake, and dietary changes) [22]. Furthermore, awareness and prevention of AD may have an impact on improving QOL of these individuals [23, 24]. There are questionnaire tools currently being validated in the SCI population to screen for bowel function, spasticity, and AD [25, 26] that may be of utility identifying these groups in the future. Nonmodifiable risk factors were also identified in our demographics analysis including female sex, younger age, and transport aetiology of SCI. By identifying these individuals at greater risk of UTI and the temporally associated conditions/decreased QOL as clinicians we can provide earlier and better prevention strategies. For example, in general, younger women are at higher risk of UTI than men because of anatomical differences (i.e., the shorter distance from the perineum to the bladder) and the alterations in the vaginal microenvironment [27]. Prevention measures such as good hygiene, water intake, probiotics, and prophylactic antibiotics may better serve this population [28,29,30]. Future studies should evaluate these preventative and prophylactic measures on laboratory diagnosed UTIs in SCI patients and their impact on healthcare utilization and QOL outcomes.

We recognize limitations in what we report. All outcomes evaluated in this report as based on data collected previously in a national survey of people who are community dwelling with SCI. Hence, all data reflect self-reporting. Although the survey questionnaires were validated, we relied upon self-reporting of UTIs, which is the respondent’s subjective response. Thus, we are unable to differentiate between UTI caused by bacterial growth versus symptoms associated with an abacterial cystitis. In addition, the symptomatology of these patients was not detailed in the survey; we recognize that patients with SCI may have different presenting symptoms of UTI that those without neurogenic bladder due to their lack of sensory and motor triggers from the bladder. Therefore, the relationships identified between self-reported UTIs and QOL measures must be interpreted with caution as this was only a measure of self-reported UTI and the incidence of confirmed infection by culture was not available due to the nature of the survey. Furthermore, we are not able to correlate the presence of a reported UTI with the severity of presentation (i.e., cystitis vs. pyelonephritis vs. ICU admission for sepsis). This information is important; future studies should evaluate predictors of UTI sequalae in this population with the goal of prevention in future guidelines. We are also unable to capture the use of ER as a primary care where patients are not admitted, perhaps underestimating the burden and costs to the healthcare system. Furthermore, during our analysis we were unable to adjust for variables such as neurologic deficit, level of injury, and time since injury; future studies should include these variables to better delineate if there are any additional underserved populations.


Utilizing a unique national survey database, we provide the first report addressing the relationship between self-reported UTI and QOL in a SCI population. We identified that the self-reporting of UTI is associated with worse QOL in terms of involvement in social activities, vocational situation, physical health, and ability to manage self-care as compared with not having a UTI. Our data highlight that in patients reporting UTIs in response to questioning also reported a higher frequency of temporally associated conditions. Contemporaneously reported bowel incontinence, constipation, and AD was associated with worse overall QOL. Furthermore, those reporting UTIs had more hospitalizations and doctor’s visits than those without with consequent impact on healthcare services utilization. As younger age and female gender are predictors for more frequent UTIs, and that temporally associated conditions such as constipation and AD are predictors for poor QOL, this information should be used in future surveillance and management guidelines for SCI. Continued use of national datasets of individuals with SCI as suggested by WHO offers a means of identifying how healthcare strategies can be enhanced and made more relevant as those with SCI move towards increased longevity.

Data archiving

The data supporting the results reported in the article can be accessed through the Rick Hansen Institute.


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The study was supported by the Rick Hansen Institute (grant number: 2010-03) and the Ontario Neurotrauma Foundation (grant number: 2010-RHI-SURVEY-812). The authors are indebted to all participants who took the survey and to the members of the Community Integration Practice Network (RHI) for their invaluable comments during the initial phase of the survey design and development. We also thank Luc Noreau and Jean Leblond as the main investigators designing this survey. The authors thank the following at the Rick Hansen Institute for data management and statistical support: Suzanne Humphreys, and Tian Shen.

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JAL and LS were responsible for designing the study and writing the paper. CR and DK were involved in the analysis of the data as well as editing of the paper. BW, AM, CR, and MN were involved in editing the paper.

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Correspondence to Jennifer A. Locke.

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Locke, J.A., Welk, B., Macnab, A. et al. Exploring the relationship between self-reported urinary tract infections to quality of life and associated conditions: insights from the spinal cord injury Community Survey. Spinal Cord 57, 1040–1047 (2019).

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