Patient Worthy partner TREND Community recently presented an abstract at the National Scleroderma Foundation Conference, which took place on July 14 in Orlando, FL. The abstract, presented as a poster at the event, was titled “Understanding the Mental Health Impact People Living with Scleroderma Using Real-World Evidence: A Social Media Analysis.”
About Scleroderma
Scleroderma, which is also referred to as systemic sclerosis, describes a group of autoimmune diseases that can cause system-wide effects in the most severe cases. The mechanism of this disease is believed to be an autoimmune response in which the immune system mistakenly attacks body tissues. Some factors that may contribute to triggering the autoimmune response include mutations of the HLA genes and exposure to certain materials, such as cleaning solvents, white spirits, ketones, and silica. Symptoms are broad-ranging and systemic, including kidney failure, erectile dysfunction, fatigue, stroke, headaches, facial pain, congestive heart failure, skin abnormalities, high blood pressure, chest pain, indigestion, and many more. Treatments are varied and depend on the symptoms, but most patients take medications in an attempt to suppress the autoimmune response. In severe cases, life expectancy is around 11 years from onset. To learn more about scleroderma, click here.
The Research
This research is derived from a data analysis from TREND that drew from 9,114 posts and comments from 1,533 people over the course of nine years, starting in 2014 and ending in 2023. TREND uses a proprietary analytics engine that draws from natural language processing and artificial intelligence. The research was intended to gain a greater understanding of the mental health burden in people that live with scleroderma and found that 1,491 of the posts/comments analyzed (16.4%) were related to mental health.
The top three mental health topics included depression, anxiety, and stress. The mental health co-occurrence network linked these three topics with phrases such as ‘autoimmune problem,’ ‘pain,’ ‘fatigue,’ ‘Raynaud’s,’ and ‘CREST syndrome,’ among others.
These correlations trace a direct connection from physical to mental symptoms of the disease and serve to illustrate the psychological burden of living with scleroderma.
The research was funded by Horizon Therapeutics, plc. You can read the abstract here.
