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

Abstract

Purpose

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-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.

Methods

Adults 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.

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-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 Rehabilitation

• Individuals 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.

Keywords:

• Ehlers-Danlos syndrome
• hypermobility spectrum disorder
• joint hypermobility
• patient satisfaction
• healthcare experiences
• health-related quality of life
• symptom management

Acknowledgements

The authors thank the Ehlers-Danlos Society for distributing our survey and all participants who responded to our survey. We would like to thank Aleen Jude, Kayla Huber, and Cassandra Davis for their assistance with this project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by a Mortensen Travel & Research Award from the University of Minnesota Psychology Department. The award funds were donated to the Ehlers-Danlos Society.