JMIR Publications

ABSTRACT

Background:

Social media has the potential to provide social support for rare disease communities, but little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases.

Objective:

We evaluated the expression of medical uncertainty on social media in the context of dyskeratosis congenita (DC), a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD).

Methods:

We content analyzed uncertainty-related posts among patients with DC/TBDs and caregivers on Facebook (FB) and Twitter managed by Team Telomere, a patient-advocacy group for this rare disease. We assessed the frequency of uncertainty-related posts, uncertainty sources, issues, and management strategies using the Han Taxonomy, and associations between uncertainty and social support.

Results:

Across all DC/TBD social media platforms, 46% of posts were uncertainty-related. Most uncertainty-related posts were authored by Team Telomere on Twitter or appeared in conversations within the FB Community Group. While uncertainty-related posts reflected multiple sources, issues, and management strategies, they primarily focused on information exchange related to diagnostic and prognostic uncertainty. All platforms had high frequency of emotional support, but only in the FB Community Group was emotional support significantly more frequent in uncertainty vs. non-uncertainty related posts (X²=7.76, DF=1, p=0.005). In all platforms, offers or requests for informational support were significantly more frequent in uncertainty-related compared to non-uncertainty-related posts (X²=468.0, DF=1, p<0.0001). Post popularity and engagement rates skewed towards lower numbers across all social media types. Popularity was highest for posts created on Twitter (range = 0-1147, median = 13) and lowest on FB Community Group (range = 0-55, median =1). Engagement was highest for FB Community Group (range = 0-29.6, median 0.54) and lowest on Twitter (range = 0-0.56, median 0.007). On FB Community Group only 36% of members created posts during the study period, and those who created posts did so with low frequency (median = 3 posts). Analysis of post creator characteristics suggested most users of DC/TBD social media are white, female, parents of patients with DC.

Conclusions:

While uncertainty is a pervasive and multifactorial issue in DC/TBDs, our findings suggest the discussion of medical uncertainty on DC/TBD social media is largely limited to brief exchanges about scientific or practical issues, rather than ongoing supportive conversation about the impact of uncertainty on personal life. The higher involvement of female parents on DC/TBD social media suggests a potentially greater burden of uncertainty management among mothers compared to other groups. More research is needed to understand the dynamics of social media engagement to manage medical uncertainty in the DC/TBD community.