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

U.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.Implications for RehabilitationIndividuals with hypermobility spectrum disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) score worse than the U.S. population on most health-related quality of life domains and symptom management self-efficacy.Individuals with HSD and hEDS report low levels of satisfaction with healthcare compared to norm groups.Participants particularly wanted to see improvements in the level of awareness and education about HSD and hEDS among healthcare professionals, provider attitudes about HSD and hEDS, and healthcare accessibility and convenience.Individuals who were less satisfied with their healthcare reported lower health-related quality of life and lower symptom management self-efficacy, underscoring the importance of improving healthcare experiences.