JMIR Publications

ABSTRACT

Background:

Young people with genetic conditions often face challenges coping with their health condition. It can be difficult for young people with rare conditions to meet someone with a similar condition, which is important for reinforcement of chronic illness management recommendations. Social media is used by 93% of young people 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 in adolescents with genetic conditions as an indicator of their perception regarding their own condition.

Objective:

The purpose of this pilot study was to examine social media use by young people with connective tissue disorders (CTDs).

Methods:

We undertook a pilot study of selected CTDs in within one pediatric clinical system occurring in young people between ages 11-25 including, Marfan syndrome (MS) Ehlers Danlos syndrome types I, II, III and IV (EDS), Beals congenital contractual arachnodactyly (Beals), and Alport’s hereditary nephritis (AHN). Patients were identified through electronic medical record search and ICD9 coding at a Midwest university-based clinic system. Medical records of potential participants were reviewed for accuracy of diagnosis prior to enrollment in the study. Study subjects completed a short survey describing their experiences with their CTDs, means of self-expression, existing network of persons to communicate with, future goals and their use of social media. Data analysis included descriptive outcomes about social media use from survey data.

Results:

Our 31 participants (44% response rate) were 55% female and average age was 18.3 years (SD= 5). All participants used social media. The majority (83%) reported they never used social media to discuss their condition and only 17% knew someone online with a similar condition. Most (63%) said they would communicate with someone with a similar disorder.

Conclusions:

We found that young individuals with CTDs 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 CTDs to connect. Peer support is important in disease management and adolescent development. Future studies should aim at understanding social media use in young people with CTDs and helping them connect with other people who have similar conditions.