The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.

BACKGROUND: Social media has the potential to provide social support for rare disease communities; however, little is known about the use of social media for the expression of medical uncertainty, a common feature of rare diseases. OBJECTIVE: This study aims to evaluate the expression of medical uncertainty on social media in the context of dyskeratosis congenita, a rare cancer-prone inherited bone marrow failure and telomere biology disorder (TBD). METHODS: We performed a content analysis of uncertainty-related posts on Facebook 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 and associations between uncertainty and social support. RESULTS: Across all TBD social media platforms, 45.98% (1269/2760) of posts were uncertainty related. Uncertainty-related posts authored by Team Telomere on Twitter focused on scientific (306/434, 70.5%) or personal (230/434, 53%) issues and reflected uncertainty arising from probability, ambiguity, or complexity. Uncertainty-related posts in conversations among patients and caregivers in the Facebook community group focused on scientific (429/511, 84%), personal (157/511, 30.7%), and practical (114/511, 22.3%) issues, many of which were related to prognostic unknowns. Both platforms suggested uncertainty management strategies that focused on information sharing and community building. Posts reflecting response-focused uncertainty management strategies (eg, emotional regulation) were more frequent on Twitter compared with the Facebook community group (χ21=3.9; P=.05), whereas posts reflecting uncertainty-focused management strategies (eg, ordering information) were more frequent in the Facebook community group compared with Twitter (χ21=55.1; P<.001). In the Facebook community group, only 36% (184/511) of members created posts during the study period, and those who created posts did so with a low frequency (median 3, IQR 1-7 posts). Analysis of post creator characteristics suggested that most users of TBD social media are White, female, and parents of patients with dyskeratosis congenita. CONCLUSIONS: Although uncertainty is a pervasive and multifactorial issue in TBDs, our findings suggest that the discussion of medical uncertainty on TBD social media is largely limited to brief exchanges about scientific, personal, or practical issues rather than ongoing supportive conversation. The nature of uncertainty-related conversations also varied by user group: patients and caregivers used social media primarily to discuss scientific uncertainties (eg, regarding prognosis), form social connections, or exchange advice on accessing and organizing medical care, whereas Team Telomere used social media to express scientific and personal issues of uncertainty and to address the emotional impact of uncertainty. The higher involvement of female parents on TBD social media suggests a potentially greater burden of uncertainty management among mothers compared with other groups. Further research is needed to understand the dynamics of social media engagement to manage medical uncertainty in the TBD community.

Prognostic value of a modified surprise question designed for use in the emergency department setting.

OBJECTIVE: Few reliable and valid prognostic tools are available to help emergency physicians identify patients who might benefit from early palliative approaches. We sought to determine if responses to a modified version of the surprise question, "Would you be surprised if this patient died in the next 30 days" could predict in-hospital mortality and resource utilization for hospitalized emergency department patients. METHODS: For this observational study, emergency physicians responded to the modified surprise question with each admission over a five-month study period. Logistic regression analyses were completed and standard test characteristics evaluated. RESULTS: 6,122 visits were evaluated. Emergency physicians responded negatively to the modified surprise question in 918 (15.1%). Test characteristics for in-hospital mortality were: sensitivity 32%, specificity 85%, positive predictive value 6%, negative predictive value 98%. The risk of intensive care unit use (relative risk [RR], 1.87; 95% confidence interval [CI], 1.45 to 2.40), use of 'comfort measures' orders (RR, 3.43; 95% CI, 2.81 to 4.18), palliative-care consultation (RR, 3.06; 95% CI, 2.62 to 3.56), and in-hospital mortality (RR, 2.18; 95% CI, 1.72 to 2.76) were greater for patients with negative responses. CONCLUSION: The modified surprise question is a simple trigger for palliative care needs, accurately identifying those at greater risk for in-hospital mortality and resource utilization. With a negative predictive value of 98%, affirmative responses to the modified surprise question provide reassurance that in-hospital death is unlikely.