Marfan syndrome patient experiences as ascertained through postings on social media sites

Abstract

Marfan syndrome (MS) is a connective tissue disorder that affects thousands of adolescents [Population Reference Bureau, 2013]. Some adolescent patients with MS may use social media to express their experiences and emotions, but little is known about what patients choose to share online. To investigate social media content related to Marfan syndrome we used search terms "Marfan syndrome" and "Marfans" on six different social media sites. The top five recent and popular posts for each site were collected and coded weekly for five weeks. Posts were excluded if they were reshared content or not in English. A codebook was developed using an iterative process to categorize posts and comments. Out of 300 posts collected 147 posts (49.0%) were included for evaluation. Categories of displayed content included personal pictures, memes and pictures featuring symptoms of MS (41.5%) and personal MS experiences (27.1% of posts). One quarter of the posts specifically mentioned a positive experience or how thankful the profile owner was for their life. A unique category of posts (13.7%) referenced Austin Carlile, a celebrity singer with MS, as a role model. Physicians and healthcare providers may consider using social media to understand common MS concerns and to place future health education materials.

A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers

“…Kelleher et al reported fatigue and depression as common symptoms discussed on social media by MFS patients. 29 This data can be useful in raising awareness for clinicians caring for these patients and facilitate appropriate adjustment of patient care. The use of social media can also help provide unity in the community and may help individuals become more comfortable sharing their experiences with MFS, creating a safe environment for encouragement and support.…”

“…The use of social media can also help provide unity in the community and may help individuals become more comfortable sharing their experiences with MFS, creating a safe environment for encouragement and support. 29 Additionally, online self-management programs could be established for Schneider et al 7 (1990)…”

“…Of the literature reviewed addressing the adult population with MFS, 16 articles mentioned psychiatric or psychological components of MFS. [6][7][8]11,12,14,16,19,[21][22][23]29,40,49,51,56 Gritti et al reviewed 13 different case reports and other literature that dealt with psychiatric and neuropsychological issues. They found that psychiatric symptoms are an important consideration as it can impact patients QoL and adherence to treatment.…”

“…Excluding case studies and case reports, there have been an additional seven articles that examined the psychiatric and psychological components of MFS. 11,19,[21][22][23]29,49 Because there is still debate on the exact relationship between certain psychiatric disorders, such as schizophrenia and MFS, the prevalence of comorbidity is unknown. Additionally, it is difficult to determine the rate of comorbidity based on case studies or case reports (e.g., Gritti et al review).…”

“…65,66 Eight of the 16 articles specifically mention features of anxiety or depression. 6,11,19,[21][22][23]29,51 Velvin et al found in their study that satisfaction with life was decreased in MFS individuals that met with a psychologist implying that these individuals could have some type of psychological distress. 49 A study by Peters et al found that patients with MFS reported overall higher rates of depression, 44% of their study population, and demonstrated a significant correlation between depression and mitral valve prolapse.…”