Project 467191

Hypermobile Ehlers-Danlos Syndrome (hEDS) and Generalized Hypermobility Spectrum Disorder (G-HSD) are heritable connective tissue disorders with multisystemic repercussions. Common symptoms include widespread chronic pain, subluxations/dislocations, fatigue, gastrointestinal dysfunction and migraines/headaches, all of which contribute to patients high levels of disability and poor quality of life. Managing these conditions can become distressing and financially burdensome to the patient. This study aims to understand the barriers and financial burden experienced by hEDS/G-HSD patients, and the relationship between the barriers and symptoms severity, disability and quality of life. In this proposed cross-sectional study, 100 Canadians with hEDS/G-HSD will be recruited from EDS-specialized treatment centers. Survey questions include health status (disability, pain, quality of life, etc.) and socioeconomic (income, education, culture, etc.) indicators, out-of-pocket medical-related expenses, productivity losses and the barriers to disease management. The data will be analysed using summary statistics and multivariate regression analysis. Identifying the barriers to optimal hEDS/G-HSD management allows practitioners to help support self-management and tailor treatment plans to patient needs. The results of this study can also effect change by enabling the development of educational self-management tools, funding programs, and policies to mitigate any barriers and optimize productivity and health outcomes in individuals with hEDS/G-HSD.