Digital Engagement of Neurocutaneous Syndrome Communities on Facebook: A Descriptive Study

Abstract

Introduction Social media has become a platform for healthcare providers and parents to communicate about common and rare pediatric disorders. Neurocutaneous syndromes including Tuberous Sclerosis Complex, Neurofibromatosis, and Sturge-Weber syndrome require lifelong monitoring and complex treatments. Clinician directed information is supplemented by online support groups, non-profit fundraising organizations, and educational programs through various Facebook features. Objective The objective of this study is to explore the socialization patterns of individuals affected by neurocutaneous syndromes as they interact and engage within various Facebook forums. Methods Public accounts on Facebook were analyzed throughout August 2022. The search terms used were Sturge-Weber Syndrome, Sturge Weber, SWS, Tuberous Sclerosis, Tuberous Sclerosis Complex (TSC), and Neurofibromatosis, Neurofibromatosis 1 (NF1), and Neurofibromatosis 2 (NF2). Facebook accounts were analyzed on the basis of page ownership and video content. Results Searching Sturge-Weber syndrome (SWS) yielded 99 Facebook pages and 37 Facebook videos. Tuberous sclerosis resulted in 100 Facebook pages and 139 Facebook videos. Neurofibromatosis yielded 102 Facebook pages and 129 Facebook Videos. Patient released stories comprised 51% of the Facebook videos (157/305), educational videos comprised 37% (112/305), and 12% (36/305) related to the syndromes awareness day. Facebook Pages were managed by nonprofit organizations 37% (111/301), community support groups 36% (108/301), and patients creating a private blog 23% (70/301), and physicians 4% (12/301). Figure 1 shows a breakdown of the Facebook page ownership and video content of neurocutaneous syndromes. Conclusion This study describes the online discussion of neurocutaneous syndromes through social media. The benefits of anonymized discussion for patients and families are many. Physicians manage only 4% of the Facebook pages and this may represent an opportunity to further disseminate medical advice in the future.