Presentation Authors: Victoria CS Scott, Gabriela Gonzalez, Los Angeles, CA, Lauren Wood Thum, Sioux Falls, SD, Taylor Sadun*, Los Angeles, CA, Sally L Maliaski, Kansas City, KS, Brennan M Spiegell, Beverly Hills, CA, Ja-Hong Kim, Los Angeles, CA, Jennifer T Anger, Beverly Hills, CA
Introduction: Little is known about patients' experiences and perceptions of the current management of recurrent urinary tract infections (rUTIs). The aim of this study was to compare patient perceptions of rUTIs generated through focus group discussions to what is said on social media platforms using digital ethnography. A comparison of the findings from two different methods of data collection will improve and validate our understanding of womenâ€™s experiences with rUTIs.
Methods: Twenty-nine women were recruited from a tertiary urology practice to participate in one of six focus groups. Topics discussed include UTI knowledge, prevention, treatment and impact on quality of life. Data analysis was performed using grounded theory methods. For the digital ethnography analysis, 83,589 posts from 859 websites were collected using a Java-based natural language processing platform. Two hundred randomized posts were analyzed using grounded theory methodology. The focus group and digital ethnography data sets were coded independently and then compared.
Results: All major themes that emerged during analysis of focus group data were reported in the analysis of social media posts. Of the 14 major themes identified through the digital ethnography analysis, twelve were also identified in analysis of focus group transcripts. A comparison of themes confirmed that UTIs have a dramatically negative impact on patientsâ€™ quality of life, patients desire non-antibiotic alternatives for prevention and treatment, and they experience significant frustration with the medical communityâ€™s current management of rUTIs. This prompted them to seek support and guidance from peers and the online community.
Conclusions: Social media presents a unique and rich opportunity to learn about the experience of non-experimental patients outside of a research setting, whereas focus group discussions allow for more concentrated data collection focused on specific topics. Although social media platforms provide perspective from a much larger, more diverse population with an anonymous forum to discuss problems in the acute setting, a comparison of patient perspectives on rUTIs gleaned from focus groups were very similar to those identified using digital ethnography, confirming the transferability of findings from both analyses.
Source of Funding: Funded by a pilot grant from NIDDK Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium