We sought to complement the work of the PLUS consortium and better understand the spectrum of bladder health, specifically overactive bladder (OAB), through the use of digital ethnography, a technique that allows direct access to free-range patient perceptions using social media analytics. Although not life-threatening, overactive bladder is a lower urinary tract syndrome that includes urinary urgency, frequency, and nocturia, with or without urgency urinary incontinence.2 We previously applied this technique to stress urinary incontinence and pelvic organ prolapse.3,4 By applying digital ethnography to traditional qualitative approaches, we investigated individuals' online behavior to learn about healthcare utilization patterns, barriers, knowledge, and treatment decision-making specifically related to OAB.
Although social media is a new data source for research and passive monitoring of health-related quality of life, it presents a rich opportunity to learn about the experience of non-experimental patients outside medical facilities. In addition, people of all education levels and ages, from adolescence to late adulthood, use social media. This allows for a sampling of perspectives from a heterogeneous population over a wide geographic distribution. We contracted with Treato, a social media mining company, to extract online posts specific to OAB using search terminologies chosen by our team and the PLUS consortium.
Once posts were identified, we combined hand coding of posts using classic Grounded Theory, as described by Charmaz, and latent Dirichlet allocation (LDA).5,6 LDA is an unsupervised probabilistic topic modeling tool that can be used as a mixed quantitative and qualitative method to identify themes in the collection of all extracted social media posts. The topics generated by LDA can be understood with the common idea of a “word cloud,” which is a distribution of words organized from most to least prevalent depending on how likely a word will co-occur with another word. We manually analyzed the contextual co-occurrence of words to identify patterns of words that, when occurring together, have semantic meaning (i.e., “bank” can have different associations when paired with “funds” versus “water”). Our manual review of topic models led to identification of several themes.
We identified 2,618 posts by 1,867 unique users between January 6, 2016 and December 5, 2018 from 203 different websites. Combining our grounded theory and LDA results, we found the following six themes: the impact of OAB on quality of life, patient-physician interactions, online engagement, symptom management, patient knowledge acquisition, and alternative therapies. Prominent quality-of-life topics discussed online included shame, depression, and pre-emptive toileting habits. Based on the subject matter of conversations, it was clear that women generally lacked awareness of the OAB treatment guidelines.7 Patients also reported frustrating encounters with physicians who did not re-assess their symptoms after the first treatment modality. Barriers to patient satisfaction included poor communication and delayed referrals to specialty physicians. The information exchanged online provided insights into self-management strategies and commonly discussed alternative therapies.
Overall, online communities allow women to self-manage their symptoms and navigate diagnostic knowledge gaps and the tiered treatment system for OAB. It allows patients to speak freely about what is considered an embarrassing condition, thereby reducing barriers to care for women with OAB. Additionally, social media research and engagement can improve patient inclusivity and outreach.
Written by: Gabriela Gonzalez, MD, MPH1 and Jennifer T. Anger, MD, MPH2
- Department of Urology, University of California, Davis School of Medicine, Sacramento, CA
- Department of Surgery, Division of Urology, Cedars-Sinai Medical Center, Los Angeles, CA
- Bavendam TG, Palmer MH, Brubaker L, et al: The Prevention of Lower Urinary Tract Symptoms ( PLUS ) Research Consortium : Bladder Health and Preventing Lower Urinary Tract. 2018; 27: 283–289.
- Haylen BT, De Ridder D, Freeman RM, et al (2010) An international urogynecological association (IUGA)/international continence society (ICS) joint report on the terminology for female pelvic floor dysfunction. Neurourol Urodyn 29:4–20. https://doi.org/10.1002/nau.20798
- Gonzalez G, Vaculik K, Khalil C, et al. Women’s experience with stress urinary incontinence: insights from social media analytics. J Urol 2020;203 (5):962–968. December 2019.
- Gonzalez G, Vaculik K, Khalil C, Zektser Y, Arnold C, Almario CV, Spiegel BMR, Anger JT. Using Digital Ethnography to Understand the Experience of Women With Pelvic Organ Prolapse. Female Pelvic Med Reconstr Surg. 2021 Feb 1;27(2):e363-e367. doi: 10.1097/SPV.0000000000000938. PMID: 32910076.
- Charmaz K. The grounded theory method: an explication and interpretation. In: Emerson RM, ed. Contemporary Filed Research. Boston, Ma: Little Brown;1983:109-127.
- Campbell JC, Hindle A, Stroulia E (2015) Latent Dirichlet Allocation: Extracting Topics from Software Engineering Data. Art Sci Anal Softw Data 3:139–159. https://doi.org/10.1016/B978-0-12-411519-4.00006-9
- Lightner DJ, Gomelsky A, Souter L, Vasavada SP. Diagnosis and Treatment of Overactive Bladder (Non-Neurogenic) in Adults: AUA/SUFU Guideline Amendment 2019. J Urol. 2019;202(3):558-563. doi:10.1097/JU.0000000000000309
- Gonzalez G, Vaculik K, Khalil C, Zektser Y, Arnold CW, Almario CV, Spiegel BMR, Anger JT. Social media analytics of overactive bladder posts: what do patients know and want to know? Int Urogynecol J. 2021 Mar 12. doi: 10.1007/s00192-021-04686-1. Epub ahead of print. PMID: 33710426.
Read the Abstract