Social media and endometriosis management

"Social media use has a positive impact on psychological, social, and cognitive health outcomes" study reports.

Key Points

Importance:

• Social media provides new opportunities to support, information, and online connectivity to the individuals dealing with endometriosis.

Highlights:

• Two-thirds of the respondents reported positive impacts on psychological, social, and cognitive health outcomes when using social media.  

What's done here:

• This single-center cross-sectional study from a tertiary hospital in Melbourne, Australia evaluated 100 patients with a confirmed diagnosis of endometriosis. 
• The assessment of social media use for their health was the primary aim.
• The factors that influenced to use the social media, their positive and negative experiences, and reported impacts on health were secondary outcomes.
• The surveys covered demographic and health information, and free-text responses addressing research questions were statistically evaluated.

Key Results:

• Most participants reported accessing social media sites more than once daily and were seeking health information that supports their endometriosis.
• Physically or physiologically more painful and symptomatic patients were more likely the users of health on social media. 
• The feeling of support, reassurance, and understanding but an overall lack of endometriosis information on social media was reported by almost all the patients. 
• The negative experiences of other patients were the cause of sadness or distress also reported by half of the responders.  
• They all agreed that they would follow a medically run social media platform regarding their disease specifically for their diet, exercise, lifestyle advice, pain management strategies,non-medical alternatives, and mental health support.
• The word "alone" was the most frequently used word in free-text responses. 

Lay Summary

Endometriosis has a negative impact on social life, work, daily activities, personal relationship, and overall quality of life. A study from Australia recently published in the Australian New Zeland Journal of Obstetrics and Gynaecology reports that social media helps these patients to share their personal troubles and engage with other users. 

To better understand the role of social media as a self-management tool for patients who were diagnosed with endometriosis, van den Haspel and colleagues from Royal Women's Hospital, Melbourne, set up a single-center, cross-sectional study in their tertiary endometriosis clinic. The study revealed that the individuals who were more painful and symptomatic physically or physiologically were more likely the users of health on social media. The feeling of support, reassurance, and understanding was reported by almost every patient using social platforms for their health. The feeling of sadness or distress, particularly after reading about others' negative experiences is also reported by half of these patients.  

An overall lack of endometriosis information on social media was also reported by almost every user. They all agreed or strongly agreed they would follow a hospital/medically run social media platform regarding their disease. The specifically lacking areas that they reported were diet, exercise, lifestyle advice, pain management strategies including non-medical alternatives, and mental health support.

The word "alone" was the most frequently used word in free-text responses. Half of the social media users reported they liked to connect with other women who had the same experiences with endometriosis.

Research Source: https://pubmed.ncbi.nlm.nih.gov/35435253/