Women with pelvic pain turn to social media for condition information, management

Similarly, 88.4% of the pain group used the internet for the same reason compared to 69.4% in the no-pain group.

“Social media is increasingly becoming a health resource for people suffering from complex and debilitating health conditions,” wrote the authors.1

The study, which was conducted between February 2018 and April 2019, comprised patients who presented with a new complaint to a gynecologist at 1 of 6 Fellowship in Minimally Invasive Gynecologic Surgery-affiliated hospital systems: Cleveland Clinic Florida, Legacy Health, Oregon Health & Science University, Scripps San Diego, Vanderbilt and University of Pittsburgh Medical Center.

Of 517 participants, 92% completed the survey, with 69.1% (n = 328) self-assigned to the pain group and 30.9% (n = 147) to the no-pain group. The mean age was 39.1 years in the pain group and 43.8 years in the no-pain group.

White women comprised 77% of the pain group, followed by 12% Black, 11% Hispanic, 7% multiracial, 4% Asian, 0.3% Amerindian or Alaskan, and 0% Pacific Islander. The race breakdown for the no-pain group was 84% White, 13% Hispanic, 8% Black, 4% multiracial, 3% Asian, 1% Amerindian or Alaskan, and 1% Pacific Islander.

Besides a significantly greater use of social media and the internet to understand or manage their condition, the pain group was also more likely to engage in social media at a higher level: 3.5 vs 1.7 (on a scale of 0 to 10) in the no-pain group (P < 0.0001).

The pain group was also more motivated by interpersonal elements of online engagement (P < 0.0001).

In addition, they preferred an interactive component to their online health resources: 35.6% vs 24.3% in the no-pain group (P < 0.0433).

Furthermore, the pain group was more influenced by others in their choice of a gynecologist: 0.37 vs 0.32 (on a scale of 0 to 1) (P < 0.009).

They also saw a mean of 2.92 physicians for the specific presenting complaint compared with only 1.80 physicians in the no-pain group (P < 0.0001).

However, the pain group was more likely to use social media as a coping tool: 38.3% vs 17% (P < 0.0001). They were also more trusting of information found on social media: 31.4% vs 16.7% (P < 0.0033).

Likewise, the pain group was more likely to trust other women with the same condition, trust informal health resources, and trust personal sources, but were less likely to trust doctors and formal health resources (P = 0.0083).

Women in both groups reported higher levels of social media engagement when experiencing higher levels of symptom bother: a 28% increase in engagement with every doubling of bother level (P < 0.0001).

“Our study suggests that higher social media use and engagement stems from medical needs unmet by the formal health care system,” wrote the authors. “Cultivating a patient care environment in which both social media and formal care can exist together might achieve better patient outcomes.”

They also noted that a comprehensive understanding of how and why social media and the internet are used by patients with chronic gynecologic pain would inform the integration of web-based tools into patient care plans.

Reference

1. Piszczek CC, Foley CE, Farag S, et al. Social media utilization, preference, and patterns of behavior in patients with gynecologic pelvic pain. Am J Obstet Gynecol. Published online November 6, 2021. doi:org/10.1016/j.ajog.2021.10.039