Healthcare Experiences Among Adults with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder in the United States

This is an original manuscript of an article published by Taylor & Francis in DISABILITY AND REHABILITATION on February 11, 2023, available at http://wwww.tandfonline.com/10.1080/09638288.2023.2176554Purpose: This 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 quality of life, and that lower healthcare satisfaction would be related to lower health-related quality of life and self-efficacy for symptom management. Methods: Adults living in the US with hEDS or HSD (N = 2,125) 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. Results: Participants 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 <.001. The most common desired change to improve healthcare was more knowledge about hEDS and HSD among healthcare professionals. Conclusions: U.S. adults with joint hypermobility report negative healthcare experiences and poor health quality of life. Future research should explore ways to improve the healthcare experiences and quality of care for individuals with hEDS and HSD.