Healthcare Experiences Among Adults with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder in the US
Objectives: Individuals with chronic illnesses often face stigma from healthcare providers that impacts their access to care and quality of life. This study aimed to examine experiences and satisfaction with healthcare among individuals experiencing issues related to hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobility spectrum disorder (HSD), connective tissue disorders associated with joint instability, chronic pain, and chronic fatigue. It was hypothesized that patient satisfaction with healthcare would be positively correlated with health-related quality of life and self-efficacy for symptom management. Methods: Adults living in the US diagnosed with or with suspected hEDS or HSD (N = 2,125) completed an online survey that was distributed in Facebook groups and by the Ehlers-Danlos Society from February-March 2022. The survey assessed patient satisfaction with healthcare (measured with the Patient Satisfaction Questionnaire; PSQ-18), health-related quality of life (measured with the Patient-Reported Outcomes Measurement Information System (PROMIS)-29 Profile v2.1), self-efficacy for symptom management (measured with the PROMIS symptom management short form 4a), and an open-ended question regarding desired changes to improve healthcare. Results: Participants reported low satisfaction with healthcare (M = 2.31, SD = 0.66 on a 5-point scale) on the PSQ-18. Scores on 5 of 7 PROMIS-29 subscales and scores on the PROMIS symptom management short form were more than 1 SD (10 points) from the US population mean. A moderate negative correlation was found between total average PSQ-18 scores and total PROMIS-29 summed scores, r(2031) = -.40, p ≤ .001. Thus, lower satisfaction with healthcare was associated with lower health-related quality of life. A moderate positive correlation was found between total average PSQ-18 scores and total PROMIS symptom management summed scores, r(2038) = .45, p ≤ .001. Thus, lower satisfaction with healthcare was associated with lower symptom management self-efficacy. Both hypotheses were supported. Conclusions: US adults with joint hypermobility report negative healthcare experiences and poor health quality of life. Lower satisfaction with healthcare is associated with lower health-related quality of life and lower symptom management self-efficacy.