Economic Impact of Ehlers-Danlos Syndrome: Patient Perspective

PRINCIPAL INVESTIGATOR: Jane R. Schubart PhD (Penn State College of Medicine)

PROJECT GOAL:  Determine the utilization of the health care system by people with EDS and the cost of their care.

STUDY TYPE: Survey questionnaire

STATUS: In process. Manuscript under review.

SUMMARY: A complete understanding of the economic burden of EDS is important to advocate for much needed health care policy changes to benefit patients with EDS. This research is a comprehensive study of the costs associated with EDS in the United States to determine the total impact on patients and the economy, including direct medical costs, non-medical costs, and loss of income. This part of the study examines the patient perspectives using a survey questionnaire distributed through patient advocacy and support groups, social media, and practitioners who see EDS patients. The results of these surveys are being analyzed at this time.