Healthcare experiences among adults with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorder in the United States

PurposeThis cross-sectional mixed-method study examined healthcare experiences among individuals in the US with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD), genetic connective tissue disorders. We hypothesized that many individuals with these conditions would report low satisfaction with healthcare and low health-related quality of life, and that lower healthcare satisfaction would be related to lower health-related quality of life and self-efficacy for symptom management.MethodsAdults living in the US with hEDS or HSD (N= 2125) completed an online survey assessing satisfaction with healthcare, health-related quality of life, and symptom management self-efficacy. Qualitative data also were gathered on desired changes to improve healthcare.ResultsParticipants reported low satisfaction with healthcare and lower health-related quality of life and symptom management self-efficacy than norm groups. Lower satisfaction with healthcare was associated with lower health-related quality of life and lower symptom management self-efficacy, ps ConclusionsU.S. adults with joint hypermobility report negative healthcare experiences and poor health-related quality of life. Future research should explore ways to improve the healthcare experiences and quality of care for individuals with hEDS and HSD.