Research Updates II

Authors: Dacre Knight, MD, MS; DeLisa Fairweather, PhD; Katelyn Bruno, PhD

In our last research update, we summarized our study on establishing our EDS Clinic. Today, we summarize our findings from a study about our group telemedicine treatment program, “EDS Living”.

Knight DRT, Bruno KA, Gehin JM, Lothman KA, Leschitz J, Lazo AL, Mejia L, Motherwell LS, Seymour-Sonnier AM, Dawson NL, Fairweather D (2022). The impact of a group telemedicine program for chronic disease: A retrospective cohort survey study on hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder. Telemed J E Health.

In this paper we describe the process of building a broad base of knowledge to allow more dedicated attention to the individual needs of our patients.

As you may know well, patients with hEDS/HSD often have a burdensome workload managing their comorbidities, coordinating care, and living with an often-misunderstood chronic condition. As a complex disease, quality of life for someone with hEDS/HSD depends on the personal knowledge of the medical condition. If education is not sufficiently provided and/or the workload is exceedingly taxing, this imbalance can be a detriment to quality of life. So, to meet this need, we created a treatment program that allows experts to meet multiple patients simultaneously and in a virtual setting—improving access to care. The results from post-program surveys show this program positively influenced the majority of patients' understanding of hEDS/HSD by providing hope and tools for improved self-management of this condition.

Our understanding about treatment methods continues to evolve, and further research will be helpful to learn what specific areas help patients the most. We are looking forward to providing you with more research as it becomes available.

Do you have any areas of research you are interested in learning more about?