Abstract
Inappropriate urinary tract infection (UTI) diagnosis in patients with neurogenic bladder (NB) may result from ambiguous symptoms experienced by these patients and contributes to antibiotic overuse. Characterization of patient-reported signs and symptoms may help providers more appropriately diagnose UTIs. A previous study collected signs and symptoms recorded in electronic medical records (EMR) of patients with NB due to spinal cord injury/disorder (SCI/D), multiple sclerosis (MS), and Parkinson’s Disease (PD) with at least one UTI diagnosis between 2017–2018 at four medical centers. In this study, twenty-three Veterans from this cohort with UTI diagnoses in the prior year participated in focus groups conducted May 2021 - May 2022. Transcripts were coded using mixed deductive and inductive coding. Qualitative data were compared to EMR data to give a comprehensive picture of signs and symptoms. Both providers and patients attributed non-specific symptoms like urine changes to UTI, but there was discordance between patients and providers in the identification of other signs and symptoms. Several patients described providers disregarding symptoms other than fever or chills. Optimizing UTI care for patients with NB could involve improving patient provider communication about UTI signs and symptoms and emphasizing thorough elicitation and evaluation of all signs and symptoms.
Keywords: urinary tract infections, urinary bladder, neurogenic, mixed methods
Introduction
Individuals with chronic neurologic disorders such as spinal cord injury/disorder (SCI/D), multiple sclerosis (MS), and Parkinson’s disease (PD) often have bladder dysfunction termed neurogenic bladder (NB).1 Urinary tract infections (UTIs) are one of the most frequent complications for individuals with NB, with up to 34% of patients with NB ≥ 1UTI per year.2 Among those with NB, UTIs are associated with increased hospital costs, morbidity, and mortality.3–5
Bacterial colonization of the urine without signs or symptoms of UTI (‘asymptomatic bacteriuria’; ASB) is common in individuals with NB and does not require routine antibiotic treatment.6,7 UTI diagnosis is made based on the presence of bacteriuria along with signs and symptoms of UTI, which guidelines have defined for people with SCI/D and catheter-associated UTI (CA-UTI).7,8 The only way to distinguish UTI from ASB is by the presence of UTI signs and symptoms. However, many classic UTI symptoms may be absent in patients with NB due to impaired bladder function and catheter use. Incomplete or inaccurate evaluation of UTI signs and symptoms in patients with NB and bacteriuria can contribute to inappropriate diagnosis and antibiotic overuse.
Prior studies in patients with NB found that changes in urine characteristics (e.g., appearance and smell) and other non-specific symptoms such as fever were the most common patient-reported and provider-documented UTI symptoms.9–11 These findings are concerning since clinical guidelines for CA-UTI management recommend against utilizing changes in urine characteristics as the sole indicator of UTI.6,7 Additional work is needed to better characterize UTI signs and symptoms in patients with NB and assess how to improve evaluation of these signs and symptoms as part of shared medical decision-making. In this study, we aimed to improve understanding of UTI signs and symptoms experienced by patients with NB by integrating qualitative data from focus group discussions (FGD) with previously collected electronic medical record (EMR) data.
Methods:
Study Design, Setting, and Sample
This study includes data from a larger mixed-methods project aiming to characterize diagnosis and treatment of ASB and UTI in patients with NB. A previously conducted retrospective cohort study identified provider-documented UTI signs and symptoms in patients with NB due to SCI/D, MS, or PD and encounters associated with a UTI diagnosis between 2017–2018 at four medical centers.11 Diagnoses of SCI/D, MS, PD, and UTI were identified primarily by International Classification of Diseases version 10 (ICD-10) codes.12 In this analysis, we integrated qualitative data with the EMR data by characterizing patient-reported UTI signs and symptoms described in FGDs conducted with a subset of patients from the larger cohort. Veterans could participate in FGDs if they had a UTI diagnosis in the year prior to the FGD. We aimed to recruit five veterans per FGD. See Figure 1 for study recruitment. Twenty-three veterans participated in eleven virtual FGDs. Low recruitment and no-shows resulted in lower-than-expected FGD size (1–4 individuals per discussion). Caregivers were not specifically recruited to participate. However, during three FGDs, a total of four non-medically trained caregivers (e.g., spouse) shared insight on the veteran’s UTI experiences. The Institutional Review Board at the Edward Hines Jr. Veteran Affairs (VA) Hospital approved this study and approved waived informed consent for participants.
Figure 1:
Flowchart of study recruitment and participant identification.
Data Collection and Analysis
Provider-documented UTI signs and symptoms were identified via EMR review and recorded in a REDCap database, as described previously.11 FGDs were conducted via Microsoft Teams between May 2021-May 2022 and were audio recorded and transcribed by the VA transcription service. A discussion guide (Supplemental Material, http://links.lww.com/PHM/C449) was developed by the study team (physicians, pharmacist, and health services researchers) with questions and follow-up prompts based on the Health Belief Model (HBM) conceptual framework13 (Supplemental Figure, http://links.lww.com/PHM/C449).
Demographics, clinical characteristics, and patient-reported signs and symptoms related to past UTIs were summarized with descriptive statistics. Signs and symptoms were categorized into those not specific to the urinary tract (‘non-specific’) and those specific to the urinary tract, as previously described.11 We utilized both deductive and inductive coding to analyze FGD data. An initial list of deductive codes was developed based on the HBM model and topics of predetermined interest. Within the constructs of the HBM model (Supplemental Figure, http://links.lww.com/PHM/C449), we inductively developed additional codes during textual analysis. Three study team members coded all data. Two team members independently coded each transcript and convened to resolve discrepancies, and the remaining member was consulted if consensus could not be reached. We synthesized codes to identify themes using memo writing and tabling techniques. We conducted FGDs until we observed no new themes. Saturation was confirmed by utilizing a ≤ 0.5% new information threshold.14 For this analysis we focused on codes related to participant descriptions of the signs and symptoms they experienced with UTIs (obtained from FGD questions and responses naturally occurring during discussion). Nvivo software (version 12) facilitated coding and data synthesis.
Results:
FGD participant (N=23) demographics were similar to those of the retrospective cohort study (N=199 ), except a greater proportion were male (96% vs. 88%), had underlying SCI/D (78% vs 36%), and used catheterization for bladder management (100% vs 77%) (Supplemental Table, http://links.lww.com/PHM/C449). After integrating the EMR data with the qualitative FGD data, we identified two major themes: 1) high frequency of non-specific signs and symptoms, notably changes in urine characteristics; and 2) discordance between provider documentation and patient-reported UTI signs and symptoms (Figure 2).
Figure 2.
Major themes with links to Health Belief Model constructs and concepts derived from focus group discussions with patients with neurogenic bladder.
(HBM, Health Belief Model; FGD, focus group discussions; UTI, urinary tract infection.)
Theme 1: High frequency of non-specific UTI signs and symptoms
Non-specific signs and symptoms were the most common sign and symptom in both provider documentation and FGDs (Table 1). A change in urine characteristics was most commonly reported by FGD participants, and the second most common symptom recorded in provider documentation. FGD participants described this as color changes, sediment, cloudiness, and smell (Table 2, quotes a-e). One participant noted a doctor diagnosed UTI when his only symptom was dark urine and sediment (Table 2, quote f). Only a few participants expressed understanding that a change in urine characteristics does not necessarily indicate a UTI (Table 2, quotes g, h). Fever, altered mental status, increased spasticity, and autonomic dysreflexia were also commonly identified non-specific symptoms (Table 1; Table 2, quotes i-l). Although urinary tract specific signs and symptoms were less frequently identified overall, several FGD participants had unique descriptions of pelvic discomfort such as their bladder being “squeezed” and “burning” (Table 2, quotes a, b) and some noted urinary frequency and urgency (Table 2, quotes c, i).
Table 1.
Comparison of provider-documented and patient-reported UTI signs and symptoms for patients with NB
| Electronic medical record review cohort (N=199)a n (%) |
Focus group discussions cohort (N=23)a n (%) |
|
|---|---|---|
| Urinary tract specific signs and symptoms | ||
| Discomfort/pain during urination | 30 (15) | 7 (30) |
| Acute hematuria | 30 (15) | 2 (9) |
| Pelvic or suprapubic discomfort/pain | 19 (10) | 10 (44) |
| Increase urinary frequency/urgency | 18 (9) | 1 (4) |
| New or increase urinary incontinence | 17 (9) | 6 (26) |
| Flank pain | 12 (6) | 0 |
| Non-specific signs and symptoms | ||
| Feverb,* | 63 (32) | 12 (52) |
| Malaise, lethargy, or sense of unease* | 41 (21) | 3 (13) |
| Rigors* | 36 (18) | 3 (13) |
| Altered mental status* | 24 (12) | 20 (87) |
| Increased spasticity* | 15 (8) | 6 (26) |
| Autonomic dysreflexia* | 4 (2) | 4 (17) |
| Change in urine color, odor, and/or consistency | 50 (25) | 15 (65) |
| Catheter malfunction | 22 (11) | 4 (17) |
| Lab abnormalities | 21 (10) | 0 |
| Weakness/falls | 13 (6) | 4 (17) |
| Gastrointestinal | 14 (7) | 2 (9) |
| Respiratory | 4 (2) | 0 |
| Otherc | 24 (12) | 12 (52) |
Guidelines7,8 indicate these can be signs and symptoms of UTI if there is no other identified cause
For signs and symptoms frequencies total >100% as patients could report more than one symptom
Defined as T>38°C or 100.4°F for provider-documented
Other symptoms (either documented in provider notes or described by focus group participants) related to UTI encounters that did not fit in the above categories
Table 2:
Focus group participant quotes supporting Theme 1 and 2
| Focus group participant quotes |
|---|
|
|
| a. “I feel like my bladder is being squeezed and I’ve been taking a lot of water, which they always see. I got a jug of water here, but no matter how much I drink, it might clear up for a minute, but then [my urine] will go dark, dark yellow again. And I got a lot of sediment” [FG 5]. |
| b. “I was getting a lot of sediment in my bag, and I could tell [I have a UTI]. I got a good early warning system…the smell of the urine, the look of it, it’s all cloudy or real dark.. the burning in my bladder⋯ Like fire picks, you know? And then [my catheter] get clogs. I start getting a pounding headache. All the AD symptoms.” [FG 6] |
| c. “I will have to go urinate…every 10, 15, 20 minutes, like I’m drinking beer or something. And I’ll go in and it’ll only be… less than 100 ccs… of course the urine becomes cloudy. Sometimes you might have something draining, some pus.. and so it’s like that in itself kind of triggers it. And then… when the AD kicks in… there’s no doubt in my mind what’s going on…” [FG 1] |
| d. “…when he’s not producing as much urine then it’s always suspicious that it might be a bladder infection. The urine is usually darker under 200 [mLs]…when I cath him I let him know how much and what color and if it’s cloudy at all we’ll even hold it to the light to see if there are particles floating in it or if it’s just that it’s cloudy urine.” [FG 13 Caregiver] |
| e. “I wasn’t seeing the cloudiness in the urine, in [the catheter] bag… I wasn’t seeing that cloudiness that would indicate something going on. So, I didn’t think it was [UTI].” [FG 1] |
| f. “…sometimes the doctor will check, even when I’m not even hurting… with the last one, I really didn’t have pain, but I just seen a lot of sediment, look like it’s a white cloud …I didn’t even know I had [a UTI].” [FG 5] |
| g. “Not necessarily will the urine be cloudy if he has a bladder infection. Sometimes it’s just cloudy it’s like the bladder must bluff off some dead cells or something.” [FG 13 Caregiver] |
| h. “Sometimes the bladder, or the urine itself is cloudy.” [FG 4] |
| i. “…my blood pressure went up about 12, 15%. And I had a fever… I had a bad headache with it, too…I wasn’t urinating…the infection caused the sensation to know I have to go to urinate…” [FG 3] |
| j. “But when I get a UTI, it doesn’t disable me or anything. I mean, I get wacky and loopy, and my wife knows immediately that I’m exhibiting the symptoms [of a UTI].” [FG 7] |
| k. “I seem to have the UTI, but it doesn’t do a lot to me until it gets so bad that I get a headache, then the fever comes, tiredness, and a lot of spasticity. And I mean a tremendous amount of spasticity.” [FG 8] |
| l. “…my UTIs don’t show the usual symptoms of fever or anything like that. It’s usually just a burning…and then one day I’ll wake up, and I’ll be disoriented, unable to speak clearly, exhibit stroke symptoms” [FG 11] |
| m. “This last UTI, I did not have a fever, my vitals were fine, but the bacteria, the doctor said, I did have a lot of bacteria in my urine, and [the ER] was gonna treat it. Treat the infection. So if I had gone to the clinic without the fever, they would not have treated it.” [FG 4] |
| n. “…I don’t usually have the fever…and that’s when the doctors say: …we don’t really think you have a UTI, because you don’t have a fever…. I feel like I’m sitting on a stick…I just have a feeling that I don’t feel good…and when I would mention that to the doctors, they would go: You don’t have a temperature…” [FG 4] |
| o. “I get tired of the same questions. Well, have you had a fever? Have you had chills? Blah, blah, blah, blah, blah. And I tell ‘em, look, I don’t get regular symptoms. I don’t get the usual symptoms. I just know I have [a UTI], and if I don’t get treatment for it, it’s gonna get worse, and I’m gonna go septic.” [FG 11] |
Theme 2: Discordance between provider documentation and patient-reported UTI signs and symptoms
There were important similarities and differences between provider documentation and FGD participant descriptions of UTI signs and symptoms. Fever was frequently reported by FGD participants (Table 2, quotes i, k) and providers (Table 1, 52% and 32%, respectively). The significance of fever was highlighted by many FGD participants, several of whom indicated that presence or absence of fever was the deciding factor for their provider to diagnose UTI, regardless of other symptoms (Table 2, quotes m, n). Several FGD participants noted that providers ignored symptoms other than fever or chills (Table 2, quotes n, o). Altered mental status was often reported by FGD participants (Table 2, quotes j, l) but less commonly recorded by providers (Table 1). Autonomic dysreflexia and increased spasticity were also more frequently reported by FGD participants (Table 2, quotes b, c, i, k) than recorded by providers (Table 1). In both the FGDs and provider documentation, there were fewer urinary tract specific signs or symptoms compared to non-specific signs and symptoms; however, comparatively more FGD participants described these compared to provider documentation (Table 1).
Discussion:
This mixed methods study highlights the variety of UTI signs and symptoms experienced by veterans with NB and provides important data to inform clinical guidelines and diagnosis algorithms for the NB population. A major theme was the prominence of non-specific signs and symptoms, particularly a change in urine characteristics, which was one of the most common symptoms identified. This result is similar to findings from prior studies of UTI symptoms in patients using intermittent catheterization9, 10 and suggests a change in urine characteristics is a powerful prompt for both patients and providers to suspect UTI and initiate diagnostic work-up. However, changes in urine characteristics are often due to non-infectious causes or a change in urine bacterial colonization, and clinical guidelines recommend providers do not use this symptom alone for UTI diagnosis.6,7 Ensuring both patients and providers understand current guidelines about the significance and appropriate management of isolated changes in urine characteristics may help improve ASB and UTI management in people with NB.
Other non-specific signs and symptoms such as altered mental status, increased spasticity, and autonomic dysreflexia were also common, and could more strongly indicate possible infection compared to changes in urine characteristics. A consensus statement from the National Institute for Disability and Rehabilitation Research regarding UTI prevention and management in persons with SCI/D suggests increased spasticity and autonomic dysreflexia may indicate UTI.8 Many FGD participants mentioned these symptoms, but they were infrequently documented by providers, possibly due both to gaps in provider documentation and a greater proportion of FGD participants having SCI/D. Since non-specific signs and symptoms may not be reliably assessed by patients themselves8 or may be non-UTI related, provider elicitation and documentation of non-specific signs and symptoms in patients with NB and suspected UTI may be particularly helpful for improving diagnostic accuracy.
Both FGD participants and provider documentation indicated more urinary tract specific signs and symptoms than expected, with almost half of FGD participants describing pelvic or bladder discomfort. In a prior study among persons with SCI/D, ‘kidney/bladder discomfort’ was less often reported compared to other UTI signs and symptoms.9 Incorporating FGD data allowed us to see the diverse ways people with NB express pain and discomfort, such as ‘burning’ and ‘squeezing.’ Lack of association between patient-reported symptoms and medical terminology for UTI sign and symptoms could account for lower reporting in provider documentation. Our results indicate urinary tract specific signs and symptoms should not be considered unlikely or dismissed in persons with NB. A thorough evaluation for these symptoms should be performed, particularly since their presence provides greater support for a UTI diagnosis compared to non-specific signs and symptoms.
Finally, there was a disconnect between providers and patients on the relative importance of certain UTI signs and symptoms. Many FGD participants felt providers required fever for diagnosis even if more specific signs or symptoms were present, leading to delays in treatment. Several FGD participants indicated they are not ‘textbook’ UTI cases and felt providers do not individualize their UTI assessment. Our findings are similar to those of a prior qualitative study where persons with SCI/D reported their UTI symptoms are erratic and without pattern.15 Our results show the importance of effective patient-provider communication for accurate UTI diagnosis, such that patients feel heard and their accounts are not being dismissed.15 For example, providers should recognize patients may use nonclinical nomenclature for UTI signs and symptoms and assess how these map to guideline descriptions.10 A recent development of standardized Urinary Symptom Questionnaires for providers to use with people with neurogenic lower urinary tract disorders could help facilitate this assessment.16
Our study had several limitations. First, our data was limited to veterans, so our results may not fully represent the non-veteran population. Second, low recruitment at times converted FGDs to semi-structured interviews; however, this may have allowed more in-depth exploration of concepts for these patients. Third, the provider documented data included individuals with PD and those who did not use catheters, whereas the FGD data did not, which could have led to differences in patient-reported signs and symptoms, particularly urinary tract specific signs and symptoms. Lastly, FGDs were conducted virtually, consequently limiting participants to those who could access Microsoft Teams.
In conclusion, both providers and patients commonly attributed changes in urine characteristics to UTI, but there was discordance in recognition of other signs and symptoms. Many patients felt providers did not fully evaluate their unique signs and symptoms. More effective patient and provider communication about UTI signs and symptoms, including individualized assessment of symptoms and evaluation for alternate sources of non-specific symptoms could help optimize UTI care for patients with NB.
Supplementary Material
Acknowledgments:
The views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the U.S. government. Quantitative results from this paper were presented in part as a poster presentation for the 2021 IDWeek virtual conference.
Funding:
This work was supported by The Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development, Health Services Research and Development (IIR 16–028 to C.T.E), Rehabilitation Research and Development Career Development Award (B2826-W to M.A.F.), and Research Career Scientist (RCS 20–192 to C.T.E.).
Data Availability:
The United States Department of Veterans Affairs (VA) places legal restrictions on access to veteran’s health care data, which includes both identifying data and sensitive patient information. The analytic data sets used for this study are not permitted to leave the VA firewall without a Data Use Agreement. However, VA data are made freely available to researchers behind the VA firewall with an approved VA study protocol. For more information, please visit https://www.virec.research.va.gov_or contact the VA Information Resource Center (VIReC) at vog.av@CeRIV.
References
- 1.Ginsberg D The epidemiology and pathophysiology of neurogenic bladder. Am J Manag Care. 2013;19:s191–6. [PubMed] [Google Scholar]
- 2.McKibben MJ, Seed P, Ross SS, et al. Urinary Tract Infection and Neurogenic Bladder. Urol Clin North Am. 2015;42:527–36. [DOI] [PubMed] [Google Scholar]
- 3.Sorokin I, & De E Options for independent bladder management in patients with spinal cord injury and hand function prohibiting intermittent catheterization. Neurourology and Urodynamics. (2015);34(2), 167–176. [DOI] [PubMed] [Google Scholar]
- 4.National Spinal Cord Injury Statistical Center. University of Alabama at Birmingham, 2021 Annual Statistical Report – Complete Public Version. (Accessed July 1, 2022, at https://www.nscisc.uab.edu/).
- 5.DeJong G, Tian W, Hsieh CH, et al. Rehospitalization in the first year of traumatic spinal cord injury after discharge from medical rehabilitation. Arch Phys Med Rehabil. 2013;94:S87–97. [DOI] [PubMed] [Google Scholar]
- 6.Nicolle LE, Gupta K, Bradley SF, et al. Clinical practice guideline for the management of asymptomatic bacteriuria: 2019 update by the Infectious Diseases Society of America. Clin Inf Dis. 2020; 68:e83–e110. [DOI] [PubMed] [Google Scholar]
- 7.Hooton TM, Bradley SF, Cardenas DD, et al. Diagnosis, prevention, and treatment of catheter-associated urinary tract infection in adults: 2009 International Clinical Practice Guidelines from the Infectious Diseases Society of America. Clin Inf Dis. 2010; 50:625–663. [DOI] [PubMed] [Google Scholar]
- 8.National Institute on Disability and Rehabilitation Research Consensus Statement January 27–29, 1992. The prevention and management of urinary tract infections among people with spinal cord injuries. The Journal of The American Paraplegia Society. 1992;15:194–207. [DOI] [PubMed] [Google Scholar]
- 9.Massa LM, Hoffman JM, & Cardenas DD Validity, accuracy, and predictive value of urinary tract infection signs and symptoms in individuals with spinal cord injury on intermittent catheterization. The journal of spinal cord medicine. 2009;32(5), 568–573. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Okamoto I, Prieto J, Avery M, Moore K, Fader M, Sartain S, & Clancy B Intermittent catheter users’ symptom identification, description and management of urinary tract infection: a qualitative study. BMJ open. 2017;7(9), e016453. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Wirth M, Suda KJ, Burns SP, Weaver FM, Collins E, Safdar N, Kartje R, Evans CT, & Fitzpatrick MA Retrospective Cohort Study of Patient-Reported Urinary Tract Infection Signs and Symptoms Among Individuals With Neurogenic Bladder. American journal of physical medicine & rehabilitation. 2023;102(8), 663–669. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Fitzpatrick MA, Wirth M, Nguyen J, Suda KJ, Weaver FM, Burns S et al. Clinical outcomes associated with guideline-discordant management of asymptomatic bacteriuria and urinary tract infection in hospitalized patients with neurogenic bladder. Antimicrobial Stewardship Healthcare Epidemiology ASHE. 2022; 2: e195. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Glanz K, Rimer B, Viswanath K. Health Behavior and Health Education: Theory, Research, and Practice. 4th ed. Jossey-Bass: San Francisco, CA, 2008. [Google Scholar]
- 14.Guest G, Namey E, Chen M. A simple method to assess and report thematic saturation in qualitative research. PloS One. 2020; 15: e0232076. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Hearn JH, Selvarajah S, Kennedy P, Taylor J. Stigma and self-management: an Interpretative Phenomenological Analysis of the impact of chronic recurrent urinary tract infections after spinal cord injury. Spinal Cord Ser Cases. 2018;4:12. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16.Tractenberg RE, Frost JK, Yumoto F, Rounds AK, Ljungberg IH, Groah SL. Validity of the Urinary Symptom Questionnaires for people with neurogenic bladder (USQNB) who void or use indwelling catheters. Spinal Cord. 2021. Sep;59(9):948–958. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The United States Department of Veterans Affairs (VA) places legal restrictions on access to veteran’s health care data, which includes both identifying data and sensitive patient information. The analytic data sets used for this study are not permitted to leave the VA firewall without a Data Use Agreement. However, VA data are made freely available to researchers behind the VA firewall with an approved VA study protocol. For more information, please visit https://www.virec.research.va.gov_or contact the VA Information Resource Center (VIReC) at vog.av@CeRIV.