Background & aims

Abdominal pain is the most common gastrointestinal symptom reported in ambulatory clinics, but little is known about its prevalence and burden of illness in the general community. We conducted a population-based survey to determine the epidemiology, clinical characteristics, and healthcare-seeking behavior of persons with abdominal pain.

Methods

Using an online survey research firm, we recruited a representative sample of adults (18 years or older) with a history of abdominal pain. The survey included questions about abdominal pain severity as measured by GI PROMIS (a validated patient-reported outcome questionnaire), healthcare-seeking behaviors, and tests performed to evaluate symptoms. We used multivariable regression models to adjust for confounding.

Results

Overall, 24,929 individuals accessed the survey and 10,300 respondents reported experiencing abdominal pain and completed the questionnaire. Most participants (81.0%) were symptomatic in the past week, as measured by GI PROMIS. Of participants with prior pain, 61.5% sought medical care for their symptoms; non-Hispanic Blacks, Latinos, and participants with more education, insurance, a usual source of care, comorbidities, and more severe pain had increased odds for seeking care. Participants who sought care consulted with the following providers: primary care physicians (84.5%), gastroenterologists (39.2%), nurse practitioners or physician assistants (18.6%), obstetricians or gynecologists (8.3%), general surgeons (7.1%), or rheumatologists (3.2%). Moreover, 72.4% of healthcare seekers received tests to evaluate their pain: cross-sectional imaging (54.2%), colonoscopy (52.3%), upper endoscopy (40.8%), exploratory surgery (6.3%), or capsule endoscopy (5.0%).

Conclusions

The burden of illness and healthcare use associated with abdominal pain is high in the United States. However, 2 of 5 individuals did not seek care for their symptoms and many of them might have undiagnosed, treatable disorders.

Objective

To characterize the decision-making process and illness experience of women with pelvic organ prolapse (POP) using large-scale social media analysis.

Methods

Digital ethnographic analysis of online posts identified through data mining was performed. Grounded theory methodology was applied to 200 posts via traditional hand coding. To supplement our qualitative approach, we applied a Latent Dirichlet Allocation probabilistic topic modeling process to review the entire data set of identified posts to ensure thematic saturation.

Results

There were 3451 posts by 2088 unique users from 117 websites worldwide that were identified via social media data mining. We found that the anonymity of online forums allowed for information and support exchange among women with POP. Our analysis revealed that the exchange of online information aids in the decision-making process and, in some instances, appears to be the primary source of information. There was confusion about the anatomical and surgical complexities of prolapse. Our study also identified misconceptions, perceived risk factors, prevention methods, and management recommendations that were discussed online.

Conclusions

This large-scale online community-based analysis demonstrated the utility of social media to better understand women's experiences with POP. Thematic findings highlighted essential concerns and challenges involved in the surgical decision-making process and the understating of the anatomical complexity of sector defects, specifically to cystocele, rectocele, State specific defects.

Objective

To evaluate the level of evidence behind recommendations on social media for disease prevention in five lower urinary tract symptoms.

Materials and methods

We conducted a digital analysis of anonymous online posts on social media sites collected by a social media data mining service. One thousand posts about pelvic organ prolapse, stress urinary incontinence, overactive bladder, urinary tract infection, and interstitial cystitis/bladder pain syndrome were randomly selected. We analyzed these posts for recommendations regarding the prevention and treatment of these diseases, which were then compared to recommendations in available clinical guidelines and assessed for level of evidence.

Results

A total of 158 of 1000 posts contained 239 prevention strategies. For pelvic organ prolapse, there were 41 strategies identified, 25 (61%) of which had no evidence. For urinary tract infection 14 of 58 (29%) had no evidence, including recommendations for dietary modifications and urinary alkalization. For overactive bladder 8 of 28 (29%) had level 4 or no evidence. For stress urinary incontinence, 12 of 34 (36%) of prevention strategies had no evidence, such as laser rejuvenation and bladder training. Interstitial cystitis had the highest number of prevention strategies, and most were low or nonevidence based (70/79, 89%).

Conclusion

Prevention and treatment strategies are common in online discussions of pelvic floor disorders, but at least one third of these recommendations have no evidential support. There is a role for further online education and social media engagement by health care specialists to promote evidence-based practices.

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.