Assessment and Acquisition of Knowledge Regarding Urinary Tract Infection Among Adult Women in the United States

Abstract

OBJECTIVE

To assess baseline UTI knowledge, interest in health resources, and platform preferences for information acquisition and dissemination.

MATERIALS AND METHODS

Adult women who had a UTI in the past 12 months were recruited from Researchmatch.org to participate in a web-based quantitative study. Women with recurrent UTI (rUTI) were compared to women with a history of UTI (without rUTI).

RESULTS

Six hundred and eighty-seven women were included in the study of which 27.4% (N = 188) had rUTI. Regarding knowledge, significantly more women without rUTI believe UTIs are caused by lack of cleanliness and that most women suffer from UTIs. Significantly more women with rUTI believe that UTIs are inherited and that getting older is associated with getting more UTIs. Regarding barriers to health information, significantly more women without rUTI feel that information is too complex and language barriers exist. More than 90% of subjects utilize their healthcare provider (HCP) for health information and most prefer office-based HCPs for health information. More than 50% of women with rUTI would like to receive UTI health updates.

CONCLUSION

Misinformation exists regarding causes, management, and prevention of UTIs. This study identified perceived barriers as well as preferred educational platforms with the hope that this will drive improvements in UTI-related health education.

Nearly 50% of adult women will incur at least 1 urinary tract infection (UTI) during their life-time.¹ Unfortunately, 20%−50% of those women will develop subsequent UTIs.² This translates to costs of $1.6 billion annually, as well as psychological, physical, mental, and functional sequelae with a worse quality of life.^1,3,4 Despite the high prevalence and significant burden associated with UTIs, patient knowledge appears to be lacking.^5,6 While a higher education level, increased frequency of UTIs, and older age are predictive of being more knowledgeable about UTIs, less than half of women demonstrate proficiency.⁶ With the availability of online health information, significant misinformation regarding UTI management and prevention strategies is ubiquitous and lack evidence.^7,8 Even federally funded websites place an emphasis on behavioral practices that are largely inaccurate and, unfortunately, propagate misconceptions about poor hygienic practice.^7,9,10 These unsupported recommendations can lead to patient shame and self-blame. Studies have shown that social media sites (ie, YouTube and TikTok) are commonly utilized for UTI knowledge by thousands of women, yet they are full of misinformation that is commonly presented by a HCP.¹¹ While easily accessed, online resources are not regulated and can be inaccurate. Women with UTI have expressed frustration in UTI management, and many desire more emphasis on prevention and research.¹² Unfortunately, there is no centralized repository with evidence-based information about UTIs for patient reference.

When considering health information resources, it is unclear how women with UTIs want to obtain accurate information. One study showed that women utilize online resources and friends and family, due to long waits to visit their HCPs.⁵ Another study regarding breast cancer screening showed that subjects had a strong preference for obtaining health information from their HCP (56%), versus the internet (22%), other media (11%), or a cancer organization (10%).¹³ Most women, however, received information from the internet (63%) and this was associated with a 46% decrease in undergoing breast cancer screening.¹³ This finding emphasizes the importance of accurate health information delivery for target populations. When considering the goals of health information dissemination, the key is to increase patient reach to a targeted audience, provide content that motivates individuals to implement knowledge, and ensure accurately tailored messages.¹⁴ The primary aim of this study was to assess current UTI knowledge among a population-based cohort of adult women who had a UTI in the past year. The secondary goals were to determine perceived barriers to attaining knowledge and how best to disseminate information.

METHODS

Recruitment

After institutional review board (IRB) approval (#221171), adult women enrolled in ResearchMatch, a national registry of research volunteers, were contacted with a one-time email advertisement inviting them to participate in an anonymous, web-based questionnaire study. Subjects were invited to share their current management, prevention, and knowledge of UTIs, in addition to preferences regarding obtaining health information about UTIs. The recruitment email clearly stated the target audience of women 18 years of age or older who have had a UTI in the last 12 months. Consent was obtained prior to starting the survey. Targeted invitations were emailed to individuals between 18 and 110 years old who identified as female; we also sent invitations to women who self-identified urinary tract infection/UTI as a health condition. Participants were incentivized with the chance to win one of ten $100 Amazon.com gift cards. Responses were captured anonymously with REDCap Survey. Invitations were sent to 48,657 women in September 2022; N = 827 subjects consented and elected to participate in the study.

Inclusion criteria included adult women (18 years or older) who had at least 1 UTI in the preceding twelve months. Subjects were excluded if they were currently pregnant, did not complete the entire survey (N = 134), or had a prior cystectomy (N = 6). After applying exclusions, the study sample included N = 687 subjects (Fig. 1) or 83% of those who responded to the survey.

Figure 1.

Summary of study recruitment including inclusion and exclusion criteria; produced by biorender.com. (Color version available online.)

Data Collected

Survey questions can be found in Supplemental Table 1.

UTI Knowledge.

UTI frequency was self-reported by subjects as the total number of UTIs in the past year. Subjects were dichotomized to rUTI if they reported 3 or more UTIs in the past year versus no rUTI (< 3 UTIs), consistent with current definitions.⁸ Participants were then asked “Please answer the following questions to the best of your ability” and provided a list of questions regarding UTI, including: are UTIs inherited?, Do you get more UTIs as you get older?, Will you definitely get UTIs as you get older?, Do tight-fitting clothes cause UTIs?, Does cranberry juice prevent UTIs?, Does being overweight cause UTIs?, Are UTIs caused by lack of cleanliness?, Can you take supplements to prevent UTIs?, Does increased water intake prevent UTIs?, Do pads for urinary leakage cause UTIs?, Do most women suffer from UTIs?; answer choices included “Yes”, “No”, and “Don’t know”.

Health Literacy Assessment.

Health literacy was then assessed using Chew et al’s validated scale comprised of 3 questions.¹⁵ Participants were asked the following: “How often do you have someone (like a family member, friend, hospital/clinic worker or caregiver) help you read hospital materials?”, “How often do you have problems learning about your medical condition because of difficulty understanding written information?”, and “How confident are you filling out (health) forms by yourself?”.¹⁵ Confidence with forms was the single most predictive question for inadequate literacy.¹⁵ Participants responded to questions on a 5-point Likert scale where 1 = All of the time and 5 = None of the time.

UTI Knowledge Acquisition.

Subjects were then asked about health communication in general and specific to UTIs. Participants were asked “How do you usually obtain medical information? Select all that apply” and provided a checklist of options including the following: Healthcare provider, online website, online forums, social media, television, hardcopy/books, health pamphlets, friends and family, community-based resources (ie, church, pharmacy, professional club), other sources, and none of the above. Participants were asked if they had smartphone access (answer choices included: Yes, No, Don’t know) and if they used various social media websites such as: Facebook, Twitter, Instagram, YouTube, Other site, or No social media. Participants were then asked “Do you feel that information is more meaningful or impactful when given by a health-care provider?” and “Do you feel that health information is more meaningful or impactful when given by a celebrity/well known personality?” with answer choices of Yes, No, and Don’t know.

Subjects were asked specifically about UTI information, such as “Have you ever looked up information about UTIs?” with answer choices of yes, no, or don’t know. They were asked how much time they would spend reviewing information regarding UTI management and prevention in 1 sitting with time frames of < 5 minutes, 5–9 minutes, 10–14 minutes, 15+ minutes, or “I would spend no time reviewing information about UTIs”. Women were asked if they would want to receive frequent updates on UTI health information (yes, no, don’t know), and, if so, the frequency of the updates (daily, weekly, monthly, yearly, “don’t know”).

Next, participants were provided a checklist with barriers to obtaining evidence-based health information: information is too complex to understand, language barriers, there is too much written information, no access to health information, I don’t know where to look for accurate information, other, none of the above.

Lastly, subjects were asked to rate their preference for various platforms for obtaining health information on a 6-point Likert scale where 1 = strongly prefer and 6 = strongly dislike; 7 = Don’t know. Platforms included: Office-based healthcare provider, virtual-based healthcare provider, group-based live session, online website, social media account, television, text messaging, email messaging, app-based digital resource, or group-based virtual session.

Clinical and Demographic Variables.

Participants self-reported age, body mass index (calculated from height and weight), race/ethnicity (including White, Black, and Other (“Other” consisted of Asian, Native Hawaiian or Other Pacific Islander, Hispanic, Prefer not to answer, or Other), education (including ‘did not complete high school’, high school graduate/GED, Associate’s or Bachelor’s degree, and Graduate or professional degree), employment status (ie, work for pay full time, work for pay part-time, unemployed, retired, on disability, or other), insurance status (ie, private, Medicare, Medicaid, military-based, other, or no insurance), and household income (including ≤$19,999, $20,000- $84,999, $85,000-$199,000, $200,000+, and Prefer not to answer).

Statistical Analysis

The primary exposure measure was the group designation of rUTI (yes or no). The independent variables were compared between groups, using chi-square and Fisher’s exact testing for categorical variables and Student’s t-test for continuous variables. SPSS version 29 software was used for analyses (Armonk, NY). P-value was < .05.

RESULTS

Of the 687 women included in the analysis, 27.4% (N = 188) reported 3 or more UTIs in the past 12 months and comprised the case group (women with rUTI). Comparisons between demographic variables among women with rUTI versus no rUTI are shown in Supplemental Table 2. The average number of UTIs over 12 months was 1.3 (standard deviation [SD] 0.48) among women without rUTI and 4.3 [SD 2.1] in women with rUTI [P < .001]. Women with rUTI were generally older (46.2 years vs 40.9 years, P < .001), less educated (high school graduate or GED 24.5% vs 17% without rUTI, P = .03), more likely to be on disability (10.1% vs 4.6% without rUTI, P = .02), more likely to make $19,999 or less (11.7% vs 5.8% without rUTI, P = .04).

UTI Knowledge Assessment

Responses to the UTI knowledge assessment can be found in Table 1. Significantly more women with rUTI agree that UTIs are inherited, you get more UTIs as you get older, and you definitely get UTIs as you get older (P < .001 for all). Significantly fewer women with rUTI agree that UTIs are caused by lack of cleanliness and that most women suffer from UTIs (P = .03 and P = .02, respectively). More than half of participants agree that you get more UTIs as you get older, tight-fitting clothes cause UTIs, supplements can prevent UTIs, increased water can prevent UTIs, and most women suffer from UTIs. Less than 25% of participants agree that UTIs are inherited, being overweight causes UTIs, and that urinary leakage causes UTIs.

Table 1.

Percentage of participants in agreement with various statements regarding UTI knowledge.

UTI Knowledge Statements: False	No Recurrent UTI N (%)	Recurrent UTI N (%)	P-value
Are UTIs inherited?	35 (7)	26 (13.8)	< .001
Will you definitely get UTIs as you get older?	87 (17.4)	62 (33)	< .001
Are UTIs caused by lack of cleanliness?	239 (47.9)	76 (40.4)	.03
Do tight-fitting clothes cause UTIs?	237 (47.5)	91 (48.4)	.39
Do pads for urinary leakage cause UTIs?	91 (18.2)	44 (23.4)	.28
Do most women suffer from UTIs?	300 (60.1)	95 (50.5)	.02
Does cranberry juice prevent UTIs?	218 (43.7)	71 (37.8)	.32
Does being overweight cause UTIs?	89 (17.8)	46 (24.5)	.14
UTI Knowledge Statements: True
Can you take supplements to prevent UTIs?	261 (52.3)	99 (52.7)	.97
Does increased water prevent UTIs?	404 (81)	145 (77.1)	.52
Do you get more UTIs as you get older?	230 (46.1)	131 (69.7)	< .001

Health Literacy.

Supplemental Table 3 displays the health literacy assessment results. No significant differences were found between groups regarding “help you read”, “difficulty understanding”, and “confident filling out” health forms. Per Chew et al, participants exhibited adequate health literacy.¹⁵

Barriers to Obtaining Health Information.

Subjects were then asked about barriers to obtaining evidence-based health information (Table 2). Significantly more women without rUTI reported information is too complex and language barriers (30.1% vs 20.2% in women with rUTI, P = .01% and 14.2% vs 6.9% in women with rUTI, P = .009, respectively). Nearly 50% of women with rUTI report no barriers (vs 39.7% women without rUTI, P = .04). Nearly a quarter of participants report too much written information and not knowing where to look for accurate information as perceived barriers.

Table 2.

Perceived barriers to obtaining evidence-based health information, and preferences for UTI- specific educational resources.

Perceived Barriers to Evidence-based Health Information	No Recurrent UTI N (%)	Recurrent UTI N (%)	P-value
Information is too complex to understand	150 (30.1)	38 (20.2)	.01
Language barriers	71 (14.2)	13 (6.9)	.009
There is too much written information	137 (27.5)	40 (21.3)	.10
No access to health information	63 (12.6)	16 (8.5)	.13
I don’t know where to look for accurate information	133 (26.7)	50 (26.6)	.99
Other	38 (7.6)	8 (4.3)	.12
None of the above	198 (39.7)	91 (48.4)	.04
Perceptions regarding UTI-specific educational resources among participants
	No recurrent UTI N (%)	Recurrent UTI N (%)	P-value
Have you ever looked up information about UTIs?	462 (92.6)	180 (95.7)	.23
How much time (in minutes) would you spend reviewing information regarding UTI management and prevention in 1 sitting?			.03
< 5 min	69 (13.8)	24 (12.8)
5–9 min	152 (30.5)	44 (23.4)
10–14 min	134 (26.9)	42 (22.3)
15+ min	139 (27.9)	75 (39.9)
I would not spend time reviewing info about UTIs	5 (1.0)	3 (1.6)
Would you like to receive frequent updates on UTI health information?	187 (37.5)	105 (55.9)	< .001
If yes, how frequently would you like to receive these updates?			< .001
Daily	13 (6.9)	4 (3.8)
Weekly	39 (20.9)	24 (22.9)
Monthly	106 (56.7)	70 (66.7)
Yearly	25 (13.4)	5 (4.8)
Don’t know	4 (2.1)	2 (1.9)

Health Information Acquisition Preferences.

When asked how they normally obtain health information, most subjects (> 80%) utilize their healthcare provider followed by online websites (Supplemental Figure 1). Fewer than one quarter of subjects use online forums, hardcopy/books, community-based resources, social media, other sources, and television. No significant differences in information platforms exist between subgroups. Nearly all subjects have a smartphone, and more than 50% of subjects use Facebook, Instagram, and YouTube social media websites (Supplemental Table 4). More than 80% of subjects consider information more meaningful when given by a HCP, whereas fewer than 10% of participants consider health information meaningful when delivered by a celebrity/well-known personality (Supplemental Table 4).

When asked to rate educational platforms, office-based healthcare provider is the most preferred followed by virtual healthcare providers and online websites (Fig. 2). Subjects dislike (rated 4–6) text messaging, group-based live session, social media accounts, group-based virtual session, and television as means for obtaining health information.

Figure 2.

Rated educational platforms. Participants were asked the following “Please rate your preference for each of the following platforms for obtaining health information. 1 = strongly prefer, 6 = strongly dislike. *P-value < .05. (Color version available online.)

Lastly, more than 90% of subjects reported looking up information about UTIs, and 54.8% of women without rUTI and 62.2% of women with rUTI would spend 10 minutes or more reviewing information about UTI management and prevention in 1 sitting (Table 2). When asked if they would want to receive frequent updates with UTI health information, 56% of women with rUTI and 37.5% of women without rUTI answered “yes” (P < .001) (Table 2). When asked about the frequency of updates, most subjects preferred monthly (66.7% of women with rUTI vs 56.7% women without rUTI).

DISCUSSION

Despite the high prevalence of UTIs among adult women and adequate self-reported health literacy, knowledge about UTIs appears to be lacking. This study revealed that many misconceptions exist regarding UTI management and prevention, especially regarding hygienic practices. Most women are aware that fluid intake and supplements can prevent UTI, and that UTIs are more common as women age. However, more than one-third of women believe that UTIs are caused by lack of cleanliness and tight-fitting clothes. They also believe that UTIs can be prevented with cranberry juice and that most women are suffering from UTIs. More than 90% of women have reviewed UTI materials previously and more than 40% would want frequent updates with UTI health materials. Creation of evidence-based educational materials can equip women with knowledge to better manage and prevent UTIs. It is known that treatment alone does not reverse the negative burden of UTI.¹⁶ However, starting women on UTI preventative measures has been shown to improve psychological burden and overall quality of life.¹⁶ While thousands of women search the internet to better gain control of their condition, many utilize sources with UTI misinformation.^7,11 This has been seen in other urologic conditions, including prostate cancer and testicular pain.^17,18 An analysis of prostate cancer health information on YouTube.com showed that 77% of videos contained misinformation in either the video itself or comments.¹⁸ They surprisingly found a negative correlation between content accuracy and viewer engagement.¹⁸

The availability of online information has mixed effects on patients. It can create feelings of anxiety or put patients at ease.¹⁹ It can lead to improved communication with physicians but also cancelled doctor appointments.¹⁹ Education, gender, and frequency of internet utilization for health information all significantly influence the impact of online resources on subjects.¹⁹ These are all considerations when creating a targeted campaign. In this study, most participants relied on and preferred their HCP for health information. This has been reported in other studies as well, even when stratifying by age and gender.²⁰ This aligns with reported barriers to obtaining health information of not knowing where to look for accurate resources, finding information to be complex, and noting too many resources. Despite nearly all subjects having smartphone access, more than 80% feel health information delivery is more meaningful from their HCP. This speaks to the importance of creating a UTI informational source that can be easily delivered by or recommended by HCPs.

Despite congruence between education and health literacy, misperceptions regarding UTI management still exist. In this study, over 40% of subjects perceived no barriers to obtaining evidence-based information. Yet, many women still exhibited inadequate UTI knowledge. Anger et al showed that among a cohort of educated and highly health-literate women, there was poor understanding of their pelvic floor disorders.²¹ This lack of understanding can lead to mismanaged expectations and dissatisfaction in care, both of which are ubiquitous in UTI management.^6,12,21 Managing misperceptions and promoting evidence-based knowledge in an easy-to-understand manner can lead to greater satisfaction in UTI care.

Like other web-based quantitative studies, there are inherent limitations to this study. The data are self-reported so misclassification bias must be considered. Additionally, responses were not verified. A single database, ResearchMatch, was utilized which limits the external validity. Women must have internet access and a level of comfort with electronic surveys to participate. Women also self-selected to participate, so selection bias should be considered. Aside from inclusion criteria, we did not control for who opted in. Lastly, the definition of rUTI that was used in this study was 3 or more UTIs in the last year which may exclude individuals who had 2 or more UTIs in 6 months. This may underrepresent the number of participants with rUTIs.

CONCLUSION

This study focuses on an important unmet need in education for women with UTIs. Misperceptions exist regarding UTI management, and women have expressed interest in the creation of evidence-based health resources. Ideally, the HCP would be equipped with information to disseminate to patients on a routine basis. However, insights from future studies, ideally in-person and qualitative in nature, are needed to better craft these resources.

Appendix A. Supporting information

Supplementary data associated with this article can be found in the online version at doi:10.1016/j.urology.2024.05.018.