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Head and Neck Surgery

(523) Understanding Head and Neck Schwannoma Patients’ Experiences Through Social Media

Monday, October 2, 2023
2:45 PM – 3:45 PM East Coast USA Time

    Presenting Author(s)

  • Madelyn N. Stevens, MD

    Head and Neck Fellow
    Medical University of South Carolina
    Charleston, South Carolina, United States

    • Co-Author(s)

  • RB

    Rhonda Baksh, Other

    Head and Neck Schwannomas, USA

    • Senior Author(s)

  • James l. Netterville, MD

    Professor of Head and Neck Oncology, Director of Head and Neck Oncologic Services
    Vanderbilt University Medical Center
    Nashville, TN, USA

Disclosure(s):
Madelyn N. Stevens, MD: No relevant relationships to disclose.


Introduction: Social media provides a unique opportunity for those with rare diseases as a platform for community-building and resource sharing. Here, we investigate how patients with head and neck schwannomas utilize a large online forum, as well as leverage the global reach of social media to better characterize treatment experiences.

Methods: This cross-sectional study recruited participants from a patient-run Facebook group called “Schwannomas of the Head/Neck” with over 900 members. Participants were invited to answer anonymous survey questions including details about demographics, diagnosis, treatment, and use of online resources.

Results: A total of 326 participants responded to the survey, mean age 51.9 (s.d. 13.0), and the majority were female (83.3%) living in the United States (65.9%). For cervical schwannomas, the most common type were vagal (n=79, 54.4%) initially presenting with a neck mass or lump while for skull base schwannomas the majority were vestibulocochlear (n=103, 90.0%) with hearing loss as the initial symptom. The most common reported treatment was observation (n=116, 45.8%) followed by surgical excision with nerve preservation (n=69, 27.4%), and surgical excision with nerve sacrifice (n=60, 23.8%). After undergoing treatment, the most common new symptoms was numbness (n=55, 23.9%), while the majority of people did not experience any new symptoms (n=76, 33.0%).
With regards to how patients utilized online resources, most identified information about their disease using a search engine (n=119, 89.9%), followed by Facebook (n=151, 69.3%) and academic articles (n=88, 40.4%). Facebook was the most common resource to identify other people with the same disease (n=191, 87.6%) and to find a group to join (n=175, 80.3%). The majority reported involvement in an online group immediately after diagnosis (n=160, 73.4%), followed by before treatment (n=52, 23.9%).

Conclusions: Social media can be used both as a research tool to understand patient experiences with head and neck schwannomas, and as a resource by patients to virtually gather and share information and experiences.