Social Media Use Among Young Adults With Connective Tissue Disorders: Cross-Sectional Pilot Study

BACKGROUND: Young people with genetic conditions often face challenges coping with their health condition. It can be difficult for them to meet someone with a similar condition, which is important for reinforcement of chronic illness management recommendations. Social media is used by 97% of young people in the United States and may provide those with these disorders a space for emotional expression and support. However, there is a scarcity of literature related to the use of social media among adolescents with genetic conditions as an indicator of their perception regarding their own condition. OBJECTIVE: The purpose of this pilot study was to obtain preliminary data to assess and understand social media use by young people with connective tissue disorders and determine whether they use social media to connect with patients with similar conditions or whether they would be interested in doing so. METHODS: We undertook a pilot study of selected connective tissue disorders occurring in young people between the ages of 11 and 25 years, including Marfan syndrome; Ehlers-Danlos syndrome subtypes classical, classical-like, cardiac-valvular, and vascular; Beals congenital contractual arachnodactyly; and Alport hereditary nephritis. The study took place within one pediatric clinical system. Patients were identified through electronic medical record search and International Classification of Diseases, Ninth Revision, coding at a Midwest university–based clinical system. Study subjects completed a short survey describing their experiences with their connective tissue disorders, their means of self-expression, their existing network of persons to communicate with, and their use of social media. Data analysis included nominal and bivariate regressions to compare social media use in relation to age. RESULTS: Our 31 participants (42% response rate) were 55% female (17/31) and their average age was 18 years (SD 5). All participants used social media and there were no statistically significant differences between social media use and age. The majority of participants (25/30, 83%) reported that they never used social media to discuss their condition (P=.09), and only 17% (5/30) knew someone online with a similar condition (P=.50). Most participants (19/30, 63%) said they would communicate with someone with a similar disorder (P=.64). CONCLUSIONS: We found that young individuals with connective tissue disorders use at least one type of social media. A majority did not use social media to discuss their condition or know someone online with a similar condition. However, many persons were interested in finding others similarly affected. Social media could serve as a platform for young people with connective tissue disorders to connect. Peer support is important in disease management and adolescent development. Future studies should aim at understanding social media use among young people with connective tissue disorders and helping them connect with other people who have similar conditions.