Physician Perspectives Surrounding Hypermobile Ehlers-Danlos Syndrome

Background: Patients with hypermobile Ehlers-Danlos syndrome (hEDS) report difficulty obtaining a diagnosis and encountering health professionals who do not believe their experiences are related to their condition.This frustration affects the therapeutic relationship, leading to resentment, distrust, and hostility toward medical personnel on the part of patients.The purpose of this study is to evaluate the education and knowledge that clinicians have surrounding hEDS.Methods: One hundred practicing orthopedists, rheumatologists, and geneticists were contacted via email to complete a confidential survey.The Patient-Practitioner Orientation Scale (PPOS) was administered, along with a set of questions relating to the diagnosis of hEDS and physician opinions surrounding the disorder.Answers were compared across physician type.Chi-square tests of proportions were used to compare hEDS knowledge by physician specialty and physician characteristics.Results: No differences were observed in PPOS scores based on physician specialty.Orthopedic providers identified 35% of the comorbidities associated with hEDS, whereas rheumatologists identified 56%.No physician surveyed identified all associated comorbidities.Rheumatologists were more likely to believe that hEDS was overdiagnosed (58%) compared with orthopedists (17%).Overall, physicians' concerns centered on the limited treatment options for patients with hEDS and the unpredictability of surgical success in these patients.Conclusions: Physician education focused on hEDS is lacking, but physicians as a whole want to learn more about the condition, highlighting the need for more clinical research to better understand the disease.Better-informed physicians will reduce the burden on patients and help re-establish patientphysician trust.