Hypermobile type Ehlers-Danlos syndrome and generalized hypermobile spectrum disorder treatment preferences - a cross-sectional survey of patients

Abstract

We aimed to assess the typical experiences, desired outcomes, satisfaction with clinical and anticipated outcomes, and the importance of improvements for individuals with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Generalized Hypermobility Spectrum Disorder (G-HSD). A cross-sectional survey was conducted among adults aged 18 and above with hEDS and G-HSD. The survey included the Patient-Centered Outcome Questionnaire and an adapted version addressing common concerns in these individuals. Descriptive statistics were used for analysis. The survey received 483 responses with an 82% completion rate. Most respondents were females (90%), aged 21-30 (30%), living in North America (76%), and diagnosed with hEDS (80%). Participants diagnosed with hEDS reported higher typical levels of pain compared to those diagnosed with G-HSD and higher expected levels of pain and interference with daily activities post-treatment (p < 0.05). The areas of most significant concern were pain, fatigue, interference with daily activities, and walking issues. Our findings revealed no differences in how individuals from both groups rated their treatment expectations, except for the usual pain level and the expected pain level and interference with daily activities post-treatment. Patients' perspectives are essential for developing appropriate treatment plans and improving outcomes for this patient population. Our results will hopefully inform the development of new interventions to impact outcomes that matter to individuals with hEDS and G-HSD.

Keywords: Ehlers-Danlos syndrome hypermobility type; Generalized hypermobility spectrum disorder; Patient outcome assessment; Patient preference; Surveys and questionnaires.