Experiences of Women With Interstitial Cystitis/Bladder Pain Syndrome: What Can We Learn From Women's Online Discussions?

PURPOSE: Interstitial cystitis/bladder pain syndrome is a debilitating chronic condition that disproportionately affects women at a ratio of 5:1. We sought to capture women's experiences with interstitial cystitis/bladder pain syndrome by conducting a large-scale digital ethnographic analysis of anonymous posts on Internet forums. MATERIALS AND METHODS: Online posts were identified using condition-specific keywords and data mining extraction services. Once posts were identified, a random sample of 200 online posts was coded and analyzed by hand using qualitative methods. A Latent Dirichlet Allocation probabilistic topic model was applied to the complete dataset to substantiate the qualitative analysis and allow for further thematic discovery. RESULTS: A total of 6,842 posts written by 3,902 unique users from 224 websites were identified. There was a significant overlap between the hand coding and Latent Dirichlet Allocation themes. Our analysis yielded the following themes: online community engagement, triggers and disease etiologies, medical comorbidities, quality of life impact, patient experience with medical care, and alternative therapies and self-management strategies. Additionally, our population appeared to have a high burden of nonurological associated syndromes. We identified barriers to patient-centered care and found that online peer support was important for women. CONCLUSIONS: Our digital ethnographic analysis is a novel application of qualitative methods using online sources. Social media analytics appears to capture a broader patient population than that typically included in clinic-based qualitative studies, such as patient interviews and focus groups. Understanding patient behaviors and concerns are important to guide strategies for improving care and the overall experience with this difficult-to-treat condition.

Qualitative Validation of a Novel VR Program for Irritable Bowel Syndrome: A VR1 Study.

INTRODUCTION: Although gut-directed psychotherapies are effective for irritable bowel syndrome (IBS), they are rarely prescribed, given a paucity of trained clinicians. Virtual reality (VR) offers a solution by allowing patients to self-practice these techniques in a standardized manner. METHODS: A multidisciplinary team developed IBS/VR, a program that transports users into immersive VR worlds that teach patients about the brain-gut axis, cognitive behavioral therapy, and gut-directed meditation. We tested IBS/VR in Rome IV IBS patients and used inductive analysis to evaluate perceptions and identify recommendations. RESULTS: We achieved thematic saturation after 9 interviews; 3 additional interviews revealed no emergent themes. After making 23 software changes based on patient feedback, we conducted 3 additional interviews which confirmed thematic saturation (N = 15 total). DISCUSSION: This study offers initial validation of the first VR program designed for IBS.

Social media analytics of overactive bladder posts: what do patients know and want to know?

OBJECTIVE: To assess women's knowledge, patient experience, and treatment decision making regarding overactive bladder (OAB) using digital ethnography. METHODS: Online posts were identified using a data mining service. Two hundred randomized posts were reviewed and coded using grounded theory. We then applied a latent Dirichlet allocation (LDA) probabilistic topic modeling process to review the entire collection of identified posts. RESULTS: A total of 2618 posts by 1867 unique users from 203 different websites were identified. Our analysis yielded six themes: the impact of OAB on quality of life, patient-physician interactions, online engagement, symptom management, patient knowledge acquisition, and alternative therapies. CONCLUSION: Overall, online communities are a source of support for women to self-manage the OAB symptom complex and help overcome treatment pathway challenges. Digital ethnography provides insight into patient knowledge and barriers to patient-centered care, which are important to improve patient outreach. Additionally, we identify similar findings to prior work, indicating the reliability of studying social media.

Chronic Constipation in the United States: Results From a Population-Based Survey Assessing Healthcare Seeking and Use of Pharmacotherapy.

OBJECTIVES: Chronic idiopathic constipation (CIC) is characterized by unsatisfactory defecation and difficult or infrequent stools. CIC affects 9%-20% of adults in the United States, and although prevalent, gaps in knowledge remain regarding CIC healthcare seeking and medication use in the community. We recruited a population-based sample to determine the prevalence and predictors of (i) individuals having discussed their constipation symptoms with a healthcare provider and (ii) the use of constipation therapies. METHODS: We recruited a representative sample of Americans aged 18 years or older who had experienced constipation. Those who met the Rome IV criteria for irritable bowel syndrome and opioid-induced constipation were excluded. The survey included questions on constipation severity, healthcare seeking, and the use of constipation medications. We used multivariable regression methods to adjust for confounders. RESULTS: Overall, 4,702 participants had experienced constipation (24.0% met the Rome IV CIC criteria). Among all respondents with previous constipation, 37.6% discussed their symptoms with a clinician (primary care provider 87.6%, gastroenterologist 26.0%, and urgent care/emergency room physician 7.7%). Age, sex, race/ethnicity, marital status, employment status, having a source of usual care, insurance status, comorbidities, locus of control, and constipation severity were associated with seeking care (P < 0.05). Overall, 47.8% of respondents were taking medication to manage their constipation: over-the-counter medication(s) only, 93.5%; prescription medication(s) only, 1.3%; and both over-the-counter medication(s) and prescription medication(s), 5.2%. DISCUSSION: We found that 3 of 5 Americans with constipation have never discussed their symptoms with a healthcare provider. Furthermore, the use of prescription medications for managing constipation symptoms is low because individuals mainly rely on over-the-counter therapies.

Patient Concerns and Perceptions Regarding Biologic Therapies in Ankylosing Spondylitis: Insights From a Large-Scale Survey of Social Media Platforms.

OBJECTIVE: Few studies have examined ankylosing spondylitis (AS) patients' concerns about and perceptions of biologic therapies, apart from traditional surveys. In this study, we used social media data to examine the knowledge, attitudes, and beliefs of AS patients regarding biologic therapies. METHODS: We collected posts published on 601 social media sites between January 1, 2016 and April 26, 2017. In each post, both an AS keyword and a biologic were mentioned. To explore themes within the collection of posts in an unsupervised manner, a latent Dirichlet allocation topic model was fit to the data set. Each discovered topic was represented as a discrete distribution over the words in the collection, similar to a word cloud. The topics were manually reviewed to identify themes, which were confirmed using thematic data analysis. RESULTS: We examined 27,416 social media posts and identified 112 themes. The majority of themes (n = 67 [60%]) focused on discussions related to AS treatment. Other themes, including the psychological impact of AS, reporting of medical literature, and AS disease consequences, accounted for the remaining 40% (n = 45). In discussions regarding AS treatment, most topics involved biologics, and most subthemes involved side effects (e.g., fatigue, allergic reactions), biologic treatment attributes (e.g., dosing, frequency), and concerns about use of biologics (e.g., increased cancer risk). Additional implicit patient needs (e.g., support) were identified using qualitative analyses. CONCLUSION: Social media revealed a dynamic range of themes governing AS patients' experience with and choice of biologic agents. The complexity of selecting biologics from among many such agents and navigating their risk/benefit profiles suggests the merit of creating online tools tailored to support patients' decision-making with regard to biologic therapies for AS.