Effective education on upper extremity reconstruction requires an understanding of the information accessible to the SCI community. Our study highlights a paucity of information on nerve transfer surgery available on social media. The information that is shared is of variable accuracy, and harbors biases based on the nature of personal experiences. Effective education strategies also require an understanding of how and what individuals with SCI wish to learn about their surgical options. The information sought by users in the seeking information axis here was primarily personal experience. These inferences can be used to guide future efforts to educate the SCI community on treatment options.
Nerve transfer improves upper extremity function in persons with SCI by coapting an expendable, functioning motor nerve from above the level of injury to one or more non-functioning recipient nerves.7 Nerve transfer can be used alone, or in conjunction with tendon transfers, an established but similarly under-utilized reconstructive option in which a tendon is moved to provide a more useful function.7 Importantly, nerve transfer may be a viable treatment option in individuals who are not candidates for tendon transfer. Electrodiagnostic studies are used to determine candidacy for nerve transfer, and in people with intact lower motor neurons to target muscle units, surgery can be effective at improving function even decades after injury.7 However, in individuals with concomitant lower motor neuron injury8, a limited window of opportunity to intervene exists, beyond which results of nerve transfer diminish.9,10 This makes timely knowledge of treatment options crucial for individuals with SCI who wish to improve upper extremity function.
People with SCI who pursue upper extremity reconstruction describe obtaining a substantial part of their knowledge about the procedure from peers who have undergone similar procedures.23 This paradigm of personal learning highlights the role of social media platforms in connection and education. With increased functionality of the internet, there is a much broader network in which to find individuals with similar experiences and goals; this is particularly important for individuals with rare conditions. The internet also allows people the opportunity to learn from peers worldwide, whereas options were previously limited to the medical expertise in their circle of care. These benefits created by the internet are especially relevant to persons living with SCI, who may have mobility and geographic barriers to forming in-person social groups.
Despite the high level of engagement and large amount of health information available on social media, our Facebook search yielded little information on nerve transfer. Of the 35 groups searched, only 9 mentioned nerve transfer, and the greatest number of mentions within a single group was 336. This is a low number considering there were more than double this number of unique posts/comments (714) in this group on the day of the search alone, and the group has been active for almost six years, or 2130 days (with over 1 million posts). This is in keeping with a paucity of information on upper extremity reconstruction information found previously on the internet as a whole using the Google and Yahoo Bing search engines16, and supports a need for more online information available on surgical options to improve upper extremity function.
The utility of peer-generated education on social media is limited by the accuracy of information shared. In general, information offered on Facebook showed good insight into the process and limitations of nerve transfers. Posts emphasized the role of pre-operative nerve conduction testing and electromyography, post-operative rehabilitation, and level of injury on possible outcomes from surgery. However, questions of what nerve transfer could achieve, or whether it was the best available treatment for an individual’s specific scenario, were not accurately answered. An experienced surgeon tailors each individual’s treatment to their specific injury pattern and treatment goals, using information on availability and quality of possible donors.24,25 Options for individuals are therefore highly variable, and this information cannot be easily shared.
Personal experience may bias information being shared that is framed as general or objective. For example, a person who undergoes a nerve transfer by a surgeon from one surgical specialty may believe this is the only specialty that performs the procedure, which can propagate a false belief amongst the online SCI community. Of the 27 recommendations made for specialties and specialists offering nerve transfer, only two posts in our study recommended a plastic surgeon, despite plastic surgeons being on the forefront of nerve transfer surgery and peripheral nerve research.7,13 Similar biases can be introduced in the discussion of medical centers. In response to a post about a specific center performing nerve transfer, one commenter made plans to travel out-of-state to receive a consult, believing this was a unique opportunity unavailable elsewhere. While nerve transfer is a highly specialized surgery performed primarily at academic centers, it is available in many locations. Attempts to find a centralized list of centers offering nerve transfer yielded no results. This points to a gap in information that would be helpful to individuals seeking consultation for nerve transfer.
Despite the limitations of inaccuracies and biases in peer-generated information, personal experience was the most frequently sought form of information in our seeking information axis. This reflects a known proclivity to learn from peers as opposed to professionals or objective resources. Individuals who learn about upper extremity reconstruction from their primary care physician or physiatrist are less likely to proceed with surgery than those who learn about it from their peers.23,26 Compared to surgeons, physiatrists were found to be more comfortable offering nonoperative options,15 and less likely to identify the benefits of reconstruction.27 An increase in peer-based learning may overcome this obstacle and lead more individuals to request referral to a surgeon for further information on reconstruction.
Questions in the seeking information axis also centered around gaining enough function to perform specific activities. Individuals pursuing reconstruction approach treatment education with personal goals, which often target recreation or employment.23 This is in contrast to the measures of independence in activities of daily living, or the Medical Research Council (MRC) Scale for strength,12 that are frequently used outcome measures within the scientific literature.23 While scales like the MRC offer benefits of validation and data that can be pooled for meta-analysis, they are inaccessible to a non-expert audience and may not reflect the outcomes most important to individuals considering undergoing reconstruction. This difference in perspectives and priorities between people living with SCI and physicians creates an obstacle when discussing both the individual value-add of pursuing reconstruction and the evidence supporting it. To bridge this gap, surgeons must consider the perspective of individuals living with SCI when framing reconstructive options within clinical discussion, as well as when designing studies on the topic.
This study highlights the need for increased awareness of nerve transfer and upper extremity reconstruction, and that social media is a prime platform for health information dissemination. Individuals living with SCI prefer information to be delivered by peers who use relatable language and experiences, and outcomes of interest must be considered from their perspective. These findings should inform future knowledge translation efforts to maximize education and subsequent uptake of upper extremity reconstructive surgery to improve function in cervical SCI. Specifically, strategies to incorporate expert knowledge with personal, peer-driven delivery on social media platforms must be developed. Ancillary to this effort, an information map of which surgeons and centers performing niche procedures should be made accessible.
Limitations of this study include use of a single online platform. Although Facebook is the dominant platform for health information exchange, other platforms including Twitter and YouTube have smaller but active health communities.17 Instagram has also emerged as an important hub for persons living with SCI. Influencers in the SCI community with mass followings act to disseminate information. The substantial reach of these groups was not captured by our study, but does represent an avenue for future education campaigns. Additional limitations are exclusion of non-English groups, which may introduce selection bias, and inclusion of a single upper extremity reconstruction technique (nerve transfer) in the search strategy. We were specifically interested in discussion of nerve transfer because it is an emerging treatment with great potential impact, making it prime for mapping information dissemination patterns. In this way nerve transfer serves as a proxy for how information is exchanged about treatment options at large within the SCI community.