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Likes And Dislikes Of Social Media Groups: The Role Of Social Media In Support And Advocacy For Patients With Thoracic Outlet Syndrome
Oceane Mauffrey, Sophie Korenek, Katharine L. McGinigle, MD MPH, Luigi Pascarella, MD.
University of North Carolina, Chapel Hill, NC, USA.
OBJECTIVES: Thoracic outlet syndrome (TOS) is a rare condition marked by neurovascular compression, leading to symptoms such as arm pain and weakness. Despite its significant impact on quality of life, TOS is frequently misdiagnosed, leading to delays in treatment and patient frustration. Social media has become a resource for patients with rare conditions. The present study seeks to assess the role of social media groups in providing avenues for support and advocacy for patients with TOS. METHODS: A survey, administered via email, was conducted among patients treated for TOS at our institution. The survey was a 10-item questionnaire that included both closed- and open-ended questions designed to assess awareness, participation, and perceived impacts of social media support groups. Quantitative data were interpreted with descriptive statistics. For the open-ended questions, an inductive thematic analysis was conducted. Two coders read through the data and manually coded patterns. Each coder derived themes from the data; any discrepancies between the two coders were discussed and 5 themes were agreed upon. RESULTS: Of the 233 surveys sent, 80 patients responded (34% response rate). 30% of respondents were active participants in TOS social media groups. Figure 1 demonstrates the effects of social media participation on specific patient centered outcomes. Advocacy also played an important role for social media participants with TOS; 54% considered themselves advocates on these platforms and 29% considered themselves advocates outside of social media groups. The most universally valued component of advocacy was the ability to discuss personal experiences with others, followed closely by sharing practical advice and recommendations. Raising awareness of the condition was also a prominent theme. Emotional support and motivation or encouragement appeared with the lowest frequency.
CONCLUSIONS: Social media support groups offer practical information, resources, and the opportunity to share one's experiences in navigating a complex and often misdiagnosed condition. These groups were found to play an important positive role in shaping patients’ mindset surrounding both diagnosis and post-operative recovery. These findings underscore the importance of online communities in addressing the needs of patients with rare conditions, suggesting potential enhancements to traditional healthcare services through such platforms is beneficial.
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