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

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https://hdl.handle.net/11299/255366

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

Authors

Estrella, Emma

Frazier, Patricia

Published Date

2023

Publisher

Taylor and Francis

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Article

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 = 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-related quality of life. Future research should explore ways to improve the healthcare experiences and quality of care for individuals with hEDS and HSD.

Keywords

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

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https://doi.org/10.1080/09638288.2023.2176554

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Estrella, Emma; Frazier, Patricia. (2023). Healthcare Experiences Among Adults with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder in the United States. Retrieved from the University Digital Conservancy, https://doi.org/10.1080/09638288.2023.2176554.

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