Nerve Transfer Surgery in Spinal Cord Injury: Online Information Sharing
Syena Moltaji, MD, University of Toronto, Toronto, ON, Canada, Christine B Novak, PT, PhD, Toronto Western Hospital Hand Program, Hospital for Sick Children, University of Toronto, Toronto, ON, Canada and Jana Dengler, MASc, MD, University of Toronto, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
Purpose: Advanced technology and internet access has increased the use of social media and online communities to obtain medical information. Nerve transfer to improve upper extremity function in persons with cervical spinal cord injury (SCI) is a new reconstructive option, and has led to more patients seeking and sharing surgical information and experiences. A better understanding of the available online information and how it is shared amongst SCI community members will allow us to address the gap that exists between patient goals and treatments offered. This study evaluated the role of social media in information-sharing within the SCI community on nerve transfer surgery.
Methods: Data were collected from Facebook, which is the favored information-sharing platform among individuals seeking medical information. Searched terms included 'spinal cord injury' and 'SCI' and excluded groups with: less than two members (n=7); closed groups (n=2); not pertaining to SCI (n=13); restricted access (n=36); and non-English (n=2). Within public and private accessed groups, searches were conducted for 'nerve', 'transfer', 'nerve transfer', and 'nerve surgery'. Each post about nerve transfer, responses to posts, and comments about nerve transfer in response to unrelated posts were tabulated. Thematic content analyses were performed and data were categorized as seeking information, sharing information, sharing support, and sharing appreciation.
Results: Our search yielded 99 Facebook groups which included 35 SCI groups (average size=2,007, largest=12,277). Nerve transfer was discussed in nine groups, with 577 total mentions of nerve transfer (25% seeking information, 54% sharing information, 16% sharing support, 5% sharing appreciation). In the seeking information axis, posts were related to personal experience (54%), objective information on nerve transfers (31%), surgeon/center performing the procedure (9%), and second opinion (4%). At least 13% of posts seeking information were from individuals learning about nerve transfers for the first time. In the sharing information axis, the posts: shared personal experience (52%); shared objective information on nerve transfer (13%); described alternative treatment (3%); tagged someone to share information (11%); linked to outside resources (12%); and recommended a specific surgeon/center (9%). We identified that patients wish to learn more on nerve transfer surgery, with a preference for peers' personal experience over objective data. Accuracy of information shared was variable.
Conclusion: Social media is an important source of information and support for people with SCI. There is a paucity of information on nerve transfers. These study findings will inform implementation of patient education strategies.
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