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Current qualitative literature about the experiences of women dealing with urinary tract infections (UTIs) is limited to patients recruited from tertiary centers and medical clinics. However, traditional focus groups and interviews may limit what patients share. Using digital ethnography, we analyzed free-range conversations of an online community.
This study aimed to investigate and characterize the patient perspectives of women dealing with UTIs using digital ethnography.
A data-mining service was used to identify online posts. A thematic analysis was conducted on a subset of the identified posts. Additionally, a latent Dirichlet allocation (LDA) probabilistic topic modeling method was applied to review the entire data set using a semiautomatic approach. Each identified topic was generated as a discrete distribution over the words in the collection, which can be thought of as a word cloud. We also performed a thematic analysis of the word cloud topic model results.
A total of 83,589 posts by 53,460 users from 859 websites were identified. Our hand-coding inductive analysis yielded the following 7 themes: quality-of-life impact, knowledge acquisition, support of the online community, health care utilization, risk factors and prevention, antibiotic treatment, and alternative therapies. Using the LDA topic model method, 105 themes were identified and consolidated into 9 categories. Of the LDA-derived themes, 25.7% (27/105) were related to online community support, and 22% (23/105) focused on UTI risk factors and prevention strategies.
Our large-scale social media analysis supports the importance and reproducibility of using online data to comprehend women’s UTI experience. This inductive thematic analysis highlights patient behavior, self-empowerment, and online media utilization by women to address their health concerns in a safe, anonymous way.
Symptomatic acute bacterial cystitis, often used interchangeably with the term urinary tract infection (UTI), affects 60% of women once in their lifetime [
Current qualitative studies among women with UTIs focus on prescription practice patterns, self-management strategies, and UTIs during pregnancy [
To understand women’s knowledge and experience with UTIs, we used digital ethnography to investigate patient perspectives via online media [
This study was found exempt by our institution’s institutional review board. To gather large-scale online posts by women with UTI, we contracted with Treato, a web-based data-mining service company that utilizes extraction templates and a proprietary search algorithm designed to capture patient content. After consultation with the PLUS Consortium, our team chose a combination of keywords related to disease nomenclature, symptoms, treatment options, and exclusion terms to identify posts using their search algorithm (
After identifying posts that met our search criteria, the entire data set was randomized to ensure that we reviewed posts from various websites before reaching thematic saturation. We performed an inductive, iterative, open-coding, qualitative analysis until we could no longer identify unique themes. Two research team members were assigned to examine the extracted posts several times. The data were then organized into different units or codes, which provides sufficient detail for the reader even without the context. Therefore, the codes were supported by text fragments. This was an iterative process; hence, as unique inductive codes emerged, they were regrouped into more specific categories, and some were combined while others were placed in a superordinate category. Our goal was to avoid redundancy among the categories, so we created broad themes encompassing the categories.
To supplement the manual inductive coding process, we applied a second, more novel technique, LDA, that allowed for the review of the entire data set. LDA is an unsupervised probabilistic topic model process that relies on the contextual co-occurrence of words to identify patterns of words that, when found together, have a semantic meaning [
Example word cloud topics with their respective prevalence and assigned themes.
Topics | Prevalence (%) | Themes |
uti, burning, symptoms, urination, urine, urinate, frequent, sensation, urinating, urge, ago, having, past, started, feel, time, discomfort, painful, year, week | 15 | Online community support (symptom sharing) |
years, utis, recurrent, months, year, ago, antibiotics, infections, cause, menopause, sex, antibotics, colonized, time, month, bladder, mg, antibiotic, uti, stopped, tried, chronic | 14 | Recurrent UTIa, risk factors and prevention |
uti, taking, antibiotics, antibiotic, prescribed, mg, infection, took, macrobid, bactrim, taken, week, amoxicillin, started, medication, nitrofurantoin, got, pills, allergic, prescription | 11.5 | Antibiotics |
use, clean, shower, utis, soap, uti, using, underwear, make, baths, used, cause, infections, toilet, utis, skin, sure, wipe, change, hot water, douche | 10.5 | Hygiene, risk factors and prevention |
infection, uti, antibiotics, need, kidneys, bladder, cause, utis, infections, untreated, symptoms, treated, pregnancy, worse, sounds, checked, definitely, serious, asap, away | 5 | Treatment (untreated UTI) |
bladder, cystitis, ic, symptoms, urologist, interstitial, years, flare, diagnosed, help, diet, chronic, uti, condition, infection, painful, urethra, thought, inflammation, pelvic, misdiagnosed | 4 | Diagnosis (overlap with interstitial cystitis) |
cranberry, drink, juice, uti, drinking, help, lots, utis, make, helps, utis, sure, pills, fluids, antibiotics, flush, bladder, need, avoid, drinks | 3.5 | Alternative therapies |
aUTI: urinary tract infection.
We identified 83,589 posts written by 53,460 unique users found on 859 websites from January 2016 to December 2018.
We identified a total of 105 themes using LDA, which were grouped into 9 categories to avoid redundancy and provide an overview of the topics represented online (
Nine categories of themes found using latent Dirichlet allocation.
Categories | Prevalence (N=105), n (%) |
Online community support | 27 (25.7) |
Risk factors and prevention | 23 (22.0) |
Self-management strategies | 14 (13.3) |
Antibiotics | 11 (10.5) |
Alternative therapies | 7 (6.7) |
Access to care | 7 (6.7) |
Treatment options | 7 (6.7) |
Quality of life | 6 (5.7) |
Diagnosis | 3 (2.9) |
Qualitative hand-coding analysis yielded 7 themes with subthemes related to the knowledge and experience of women with UTI symptoms (
Themes and illustrative examples from 200 online posts.
Theme | Subtheme | Example quotes |
Quality of life |
Impact on sexual health Fear Pain Self-blame |
“UTIs always dictate my life and make me feel very low, I’m always worried about going out for the day and whether there will be toilets around” “feeling helpless, like it’s a nightmare: rUTIs” |
Knowledge acquisition |
Differential diagnosis UTIa workup Seeking an etiology ICb symptom overlap Untreated UTIs |
“I was told I had trace blood in urine…what’s trace?... Dr. didn’t explain.” “Some of what I thought was constant UTIs was actually interstitial cystitis - an inflammation triggered by acidic foods.” “Interstitial cystitis is similar to recurring UTI, with WBC and no bacteria” |
Support of online community |
Online engagement Seeking advice Symptom sharing Information exchange Self-management strategies Unique populations |
“Are these things true or is it a myth?” “The information here to understand my dreadful cycles of UTIs is better than any library.” “Just wondering if anyone has ever gotten or heard of someone that has gotten misdiagnosed with recurrent urine infections when they have other bladder problems.” “Girl, get to the doctor ASAP. UTIs are no joke. They basically travel up the urinary tract and you can get a bladder infection or even a kidney infection. You don't want that. Go to urgent care if you have to. They just need a pee sample. Amoxicillin is your friend!” |
Health care utilization |
Access barriers Treatment location Patient-physician interactions |
“I’m losing a lonely battle with the medical community as these UTIs won’t go away. I’m glad you are here.” “I need to take an action list...no one gives me straight answers.” “If you can't go to the ER due to no insurance, what about a Planned Parenthood? When I was between insurance plans, I went there for UTI's, and all other lady things.” “Mismanagement always happens so recommend seeing a urogynecologist, not a GP.” |
Risk factors and prevention |
Dehydration Hygiene Anatomical differences Hormonal imbalances Gynecologic factors Comorbid conditions |
“Women should be drinking 3L of water per day to prevent UTIs.” “I’ve heard that douching, tampons soaked in different things (tried in the past) can help treat and prevent urine infections.” “Prolapse after pregnancy and ‘abnormal anatomy’ making more prone to infections.” |
Antibiotic treatment |
Treatment duration Safety and side effects Multidrug-resistant bacteria Effect on microbiome Culture-directed antibiotic treatment |
“Prescribing antibiotics for UTIs seems weird.” “It [antibiotic] slayed me! In bed, exhaustion and major aches like I had the flu.” “I’ve done a 5-day course of antibiotics…no improvement” “You get better improvement with antibiotics for 7 days with no sex.” |
Alternative therapies |
Homeopathy Dietary modifications |
“Homeopathic medicine…is more tailored to you, they spend an hour talking to you and can treat your urine infection.” “D-mannose can be used as a treatment or preventatively and I think would be most useful for your mom since it works by sort of lubricating the urinary tract, so the bacteria are unable to stick on and cause inflammation.” “Infections damage bladder lining. recommend drinking baking soda.” |
aUTI: urinary tract infection.
bIC: interstitial cystitis.
The first theme was the quality-of-life burden associated with UTI episodes. The impact on women’s sexual health was frequently mentioned in the context of limiting intercourse due to aggravating symptoms (pain) and managing postcoital antibiotic use. Women described significant negative emotions and hopelessness when they sought self-management strategies and medical care. Self-blame was central to the negative emotions described, as women searched for inherent personal factors causing repetitive infections. Fear of worsening symptoms and progression to pyelonephritis was frequently mentioned.
Patient knowledge acquisition was another major theme. Based on the keyword content of the posts, it appeared that women consulted online resources at different time intervals to supplement their decision-making while experiencing UTI symptoms or seeking medical care. Some users focused on identifying a differential diagnosis and a specific etiology, while others described self-blame. There was a lack of consensus regarding the optimal work-up and management of UTIs, as evidenced by people providing inconsistent advice to each other on these forums. The misdiagnosis of rUTIs and interstitial cystitis due to symptom overlap, delayed referral, and perceived lack of physician knowledge appeared frequently.
The value and gratitude expressed for the support provided by online communities was another identified theme. In addition to the plethora of information exchanged, including symptom sharing and lay recommendations, we identified geriatric patients, pregnant women, and those with rUTIs as unique populations who frequently appeared as the subject matter of posts with special considerations. Pregnant women had specific interests regarding antibiotic safety and the development of pyelonephritis.
The third theme was health care utilization with subthemes centering on the contextual factors influencing whether or not people sought care. Posts included concerns about minimal insurance coverage or being uninsured. Additionally, multiple medical visits for recurrent infections appeared to cause fatigue, frustration, and loss of work productivity. Furthermore, the perceived lack of illness clarity and lack of cure affected the way users commented about their experience.
Risk factors and prevention was another theme we identified. Women sought to understand their respective predisposing contributions due to day-to-day activities. The appropriate preventive hydration level was frequently mentioned, with various levels ranging from 1 to 3 L of water. Additionally, genital hygiene (self and partners’) practices were discussed. Pelvic organ prolapse and vaginal atrophy were perceived to increase the risk of UTIs. Diabetes and dementia were also frequently mentioned risk factors. Gynecologic factors that were discussed included methods of contraception and menstrual cycle sanitation products.
Treatment of UTIs with antibiotics was another identified theme. The appropriate duration and variation in the prescribed length of treatment were discussed, as were the safety and side effects of antibiotics for pregnant and nonpregnant women. The online community misunderstood antibiotic resistance as a patient characteristic that developed, rather than as a bacterial phenomenon. Recommendations to restore the natural gut microbiome were exchanged. The final identified theme was alternative therapies beyond antibiotics to self-manage symptoms, ameliorate current infections, or prevent further UTIs. Some of these alternative therapies included bacteriophage therapy, cranberry products, d-mannose, vitamin C, probiotics, bladder instillation of hyaluronic acid, and oral activated charcoal treatments.
Our ethnographic study of social media posts on UTIs revealed information on illness experience, lay knowledge, and concerns among women. Unlike prior qualitative studies, we presented patient perspectives that are likely more diverse and candid than data gathered from specialty clinics [
We captured broad and diverse patient experiences using two methods to conduct digital ethnography. However, our inductive hand coding provided more granular details as expected from directly analyzing quotes, which helped us comprehend online discussions and women’s perspectives for specific themes. For example, culture-directed antibiotic treatment was a unique patient concern identified with our hand coding of posts that was not found using LDA. Although the LDA word clouds consistently represented quality-of-life concerns, hand coding provided examples of fears women faced. Half of the LDA themes related to community support and identifying risk factors and prevention strategies, which was consistent with our hand-coding results.
Ghouri et al [
Our study was broad, capturing different populations of women. This better allowed the analysis to be guided by the direct, anonymous discussions of patients, making it more likely to be generalizable to the UTI population at large. Prior work only surveyed patients recruited from clinical settings, those with rUTI, and pregnant women [
Unlike prior online studies, our study design has the advantage of analyzing multiple websites [
The semistructured interview style of many qualitative studies may limit and potentially narrow the scope of what patients share in clinical settings. One qualitative one-on-one interview study of 21 women recruited from a larger primary care trial found that patients wanted clinicians to address quality-of-life impact and that they were receptive to the strategy of antibiotic delay, which allows for 48 hours to reassess if infection symptoms subside before starting antibiotics [
Online discussion points were in agreement with the 2019 American Urological Association’s guidelines for uncomplicated rUTI, which recommend first-line antibiotic agents and promote culture-directed antibiotic treatments rather than empiric treatment [
Despite the innovation and patient inclusivity of our study, there are important limitations that can inform future work. We did not have access to demographic information, and the website content could have been restricted by the sample of websites accessed by Treato and our search strategy. Although we focused our analysis on women, it is possible that some men participated on the forums and were included in the analyses. The anonymous data may also contribute to patient misclassification since we cannot confirm a diagnosis, but our best attempt was made using contextual factors. Additionally, our analysis and conclusion relied on the degree to which individuals post online. We could not characterize specific posts’ engagement level, such as individual read and reply counts. Our study, by default, excluded those women who do not exchange medical information on the internet.
Digital ethnography combining qualitative analysis and LDA allowed us to analyze free-range patient perspectives, which are currently not found in the UTI literature. First, unlike focus group studies, anonymity is a clear driver of candid, honest conversations, facilitating online users to provide support and address the most important concerns. Second, there was a pervasive element of fear: fear of not treating UTIs, as well as fear of the sequelae associated with antibiotic treatments. Finally, the use of online forums empowered women to self-manage their condition and take their care into their own hands. Our findings also demonstrate the reliability of using online social media data to learn about patient behavior and decision-making, which is important to guide how we engage with patients and disseminate society-sponsored guidelines. Patient information, outreach, and treatment guidelines by medical societies must be congruent with patients’ concerns. Physicians can use this data to discuss misconceptions and improve patient-centered care.
Search and exclusion terms used in the Treato algorithm.
latent Dirichlet allocation
Prevention of Lower Urinary Tract Symptoms
recurrent urinary tract infection
urinary tract infection
This study was funded by a pilot grant from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium (to authors JA, BS).
None declared.