Background/Purpose: The impact of social media on individual or institutional communication and knowledge acquisition is non-negligible. Whether patients (pts) with rheumatic diseases share information about their health on social media is unknown. We aimed to investigate how often and to what extent pts with a rheumatic condition use social media. We also wanted to know whether they communicate with their doctors through social media and what are their expectations.

Methods: Consecutive pts with diverse diagnoses attending a rheumatology outpatient clinic were studied. Pts completed a self-administered questionnaire (1) which was modified. Information on demographic features, educational status and diagnosis was also recorded.

Results: We studied 244 (154 F/ 90 M) pts with a median age of 46 years [IQR: 35-55]. Pts were diagnosed as RA (30%), SpA (29%), connective tissue disease (14%), Behçet’s syndrome (12%), familial Mediterranean fever (11%) and other diseases (4 %). 44 % were only elementary school educated. 17 % (n=42) did not have any of the communication devices, hence presumed to be social media non-users. Among the remaining 202 pts with devices, 12 (6 %) additional pts were defined again as non-users, thus social media users reached 77 % (190/244) in total. Smart phone users were in the majority (74 %). Facebook was the most preferred social media website (79%), followed by Instagram (70%), Twitter (50%) and Pinterest (13%). While, Facebook users and non-users were similar according to age, gender or educational status, Twitter users were more likely to be male and more educated (Figure). The majority of the pts (78 %) thought that social media was a useful information source about health. A total of 77% had no communication connection with their rheumatologist. While 96 % were willing to communicate with their doctors through one of the social media source, 75 % desired to be friends with their rheumatologist on the Facebook. When we asked “why would you like to communicate with your rheumatologist?”; the majority (39 %) responded that it would be easier to understand each other; % 32 thought that they would feel more connected, % 27 thought that their rheumatologist would be more responsible, and 21% thought that their disease will get better.

Conclusion: This survey showed that younger and more educated pts had significantly more communication devices. Facebook was the most preferred social media website. More educated pts prefer using Twitter, Instagram and Pinterest and younger pts Instagram and Pinterest. The majority thought that social media was a useful information source about health. While only 23 % had an actual connection with their rheumatologist through social media, 75 % desired to be friends with their rheumatologist on the Facebook.

1)      Hausman JS et al. "Adolescent and young adult use of social media for health and its implications." Journal of Adolescent Health 2017.