The role of social media in management of individuals with endometriosis: A cross-sectional study.

Abstract

To better understand the potential role of social media (SM) as a self-management tool for individuals with endometriosis and to assess its current use by endometriosis patients. The primary outcome was use of SM for health in patients with endometriosis. Secondary outcomes included preferred SM platforms for health information sharing and factors that influenced use, positive and negative experiences and reported impacts on health. A single-centre, cross-sectional study performed within benign gynaecology units at a tertiary hospital in Melbourne, Australia. One hundred patients with a confirmed diagnosis of endometriosis participated. Individuals did not have to be users of SM. Data were collected through an electronic third-party survey tool (SurveyMonkey® ). Analysis methods included descriptive statistical analysis, frequency counts, as well as cross-tabulation to examine statistical association between variables. Free-text responses were qualitatively analysed using deductive-inductive semantic thematic analysis. Social media was used for health by 76% of patients with endometriosis in this study. SM users were younger, had pelvic pain for more than six months and reported higher rates of psychosocial impact and symptoms from endometriosis. Respondents reported overall positive impacts on psychological, social and cognitive health outcomes (76%) from SM use. In our cohort, a high number of people with endometriosis are using SM for health. These individuals are more likely to suffer both physical and psychosocial impacts from endometriosis. Hospitals and health organisations may consider support of the endometriosis community through SM.