Master of Science, The Ohio State University, 2024, Genetic Counseling
Background: Vascular Ehlers-Danlos syndrome (vEDS) is a life-threatening connective tissue disorder caused by pathogenic variants in the COL3A1 gene. Patients can experience aortic or arterial dissections and hollow organ rupture. While it is rare, affecting between 1/50,000 and 1/200,000 people, support organizations exist. The goal of this study is to determine what information would be helpful for support organizations of the vEDS community to prioritize programming regarding mental health support and how the social aspect of support organizations impacts mental health.
Methods: People with vEDS and their first-degree family members, including spouses/partners, were surveyed about their mental health, traumatic experiences -including vicarious trauma -, and support organization participation. An electronic survey was administered, which included the STOP-D, OSSS-3, demographic questions, and questions regarding support organization participation, priorities, exposure to trauma, what materials they would like a support organization to provide regarding grief/trauma, and preferred ways of receiving information.
Results: One hundred forty-three people participated. Statistically significant relationships were found between experiencing trauma and vicarious trauma (p=0.002) and having access to a provider who listens and confidence in a provider's knowledge of vEDS (p=0.001). Ninety five percent of those who reported vicarious trauma also reported experiencing at least one traumatic event. There was no association found between vicarious trauma and subtype of experienced trauma, or between vicarious trauma and support group participation. Although not statistically significant, high stress was reported for both people with vEDS (65%) and their unaffected family members (60%). Participants also wanted a variety of materials or programs from a support organization, including peer support, individual and group therapy, information on advanced directives, and 24/ (open full item for complete abstract)
Committee: Gretchen MacCarrick (Advisor); Kristen Carpenter (Committee Member); Elizabeth Jordan (Committee Chair)
Subjects: Genetics; Mental Health