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SUFU 2022: "I Just Need to Know I'm Not Alone”: A Qualitative Analysis of Reddit Discourse on Recurrent Uncomplicated Urinary Tract Infections

(UroToday.com) The aim of this qualitative study was to qualitatively analyze rUTI discourse on the website Reddit and identify areas that healthcare professionals may better address to improve care for women with rUTI. The authors queried public subreddits r/TwoXChromosomes, r/Askwomen, r/WomensHealth, and r/CUTI for combinations of the search terms “recurrent” or “chronic” “urinary tract infection”, “UTI”, or “cystitis”, as well as abbreviations “rUTI” and “cUTI”. Search results from r/CUTI were limited to the most recent 200 posts, while no limit was placed on other subreddits. All posts were reviewed for relevance to uncomplicated rUTI; from relevant posts, study team members used a small subset to inductively identify themes and develop a codebook. Posts were coded using the web application Dedoose and analyzed thematically and the codebook was finalized using an iterative process.

The search yielded 704 posts, of which 306 were identified as relevant and analyzed. Post authors were primarily premenopausal women experiencing rUTI located in the United States, United Kingdom, Canada, and Australia. The authors provided quotes from these women around the following preliminary themes:

  1. trust in online communities for support and advice
  2. lack of support from healthcare professionals
  3. willingness to try new strategies for rUTI management
  4. frustration with rUTI-associated morbidity.
Emergent concepts from the preliminary themes were:

  1. decreased confidence in healthcare providers leads to avoidance of the formal healthcare system and reliance on online support communities
  2. anxiety about repeated use of antibiotics results in a search for alternative therapies and promotion of more sensitive bacterial detection methods
  3. long term rUTI has far-reaching effects on personal relationships, psychological and sexual health.
The authors concluded that women with rUTI perceive a lack of support from healthcare professionals and preferentially seek support and advice from online communities. They seek advice in relation to prevention and treatment of recurrences. Healthcare professionals need to become familiar with online discourse so that they can dispel misconceptions about rUTI management and to address unmet health needs in clinical practice.

Funding: Office of Global Health, UT Southwestern Medical Center

Presented by: Zara Khan,1 Parker R.M. Kenee,1 Shanee Abouzaglo,1 Jennifer Foster,1 Jordan McCoy,1 Naeemul Hassan, PhD,2 Philippe E. Zimmern, MD,3 Rena D. Malik, MD4

  1. University of Texas Southwestern Medical School, Dallas
  2. Department of Computer Science, University of Maryland, College Park
  3. Department of Urology, University of Texas Southwestern Medical Center
  4. Department of Urology, University of Maryland School of Medicine, Baltimore

Written by: Diane K. Newman, DNP, ANP-BC, FAAN, Adjunct Professor of Urology in Surgery, Perelman School of Medicine, University of Pennsylvania and Co-Director of the Penn Center for Continence and Pelvic Health at the 2022 Society of Urodynamics, Female Pelvic Medicine & Urogenital Reconstruction (SUFU) Winter Meeting, February 22 - 26, 2022