Social media utilization, preferences, and patterns of behavior in patients with gynecologic pelvic pain

Background: Social media is increasingly becoming a health resource for people suffering from complex and debilitating health conditions. A comprehensive understanding of how and why social media and the Internet are used among patients with chronic gynecologic pain will allow for the intentional development and incorporation of web-based tools into patient care plans. Objective: This study aimed to determine whether gynecologic patients with pain are more likely to use social media and the Internet to understand and manage their condition than those without pain. The survey was designed to explore how gynecologic patients with and without pain use and interact with social media and other web-based health resources and the clinical, personal, and demographic factors influencing these behaviors. Study Design: Patients presenting with a new complaint to a gynecologist at 1 of 6 Fellowship in Minimally Invasive Gynecologic Surgery–affiliated hospital systems were screened, consented, and assigned to pain and no-pain groups. Participants were surveyed about social media and Internet use, symptoms, bother, physician selection, motivation, trust, and demographic information. Survey responses were compared using the Fisher exact tests, odds ratios, and risk ratios from standard tabular analysis, univariate or multivariate tests of means, and regression analyses, as appropriate. Results: Of 517 participants included in the study, 475 (92%) completed the survey, 328 (69.1%) with pain and 147 (30.9%) without pain. Study participants in the pain group reported more than double the odds of using social media than those without pain (37.8% vs 19.7%; odds ratio, 2.47; 95% confidence interval, 1.54–3.96) and triple the odds of using the Internet (88.4% vs 69.4%; odds ratio, 3.37; 95% confidence, 2.04–5.56) to understand or manage their condition. Participants with pain were more likely than those without pain to engage in social media at a higher level (3.5 vs 1.7 on a scale of 0 to 10; P<.0001), be motivated by interpersonal elements of online engagement (Hotelling's T²=37.3; P<.0001), prefer an interactive component to their online health resource (35.6% vs 24.3%; risk ratio, 1.46; 95% confidence interval, 1.00–2.20; P=.0433), be influenced by others in their choice of a gynecologist (0.37 vs 0.32 on a scale of 0 to 1; P=.009), use social media as a coping tool (38.3% vs 17%; P=.0001), trust information found on social media (31.4% vs 16.7%; P=.0033), and trust other women with the same condition, informal health resources, and personal sources more and doctors and formal health resources less (P=.0083). Participants in both groups reported higher levels of social media engagement with higher levels of symptom bother (28% increase in engagement with every doubling of bother level (P<.0001). Conclusion: Patients with gynecologic pain were more likely than those without pain to use social media and the Internet to understand and manage their condition. Patients with pain engaged in and trusted social media at a higher level, with engagement rising directly with bother level.