Patient Perspectives on Healthcare in Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders: An Online Survey

Abstract Background: Little is known about the healthcare services experiences of people living with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) in Sweden. An investigation into how people with EDS in Sweden access and experience healthcare related to their diagnosis is needed to improve care services. Objective: To explore how people with HSD and EDS (HSD/EDS) use and perceive healthcare services in Sweden. Methods: An anonymous survey was sent to members of Rare Diseases Sweden in November-December 2021. The descriptive analysis (counts, percentages) focused on data from 277 respondents who reported having an HSD/EDS or hypermobility diagnosis and who responded for themselves, as a patient. Results: The majority of respondents were adult women, residing in one of the three most populous regions, diagnosed as an adult. Notably, about half reported being denied care due to their EDS diagnosis and as many experienced a long diagnostic journey of over 10 years. Fewer than half reported having sufficient information about HSD/EDS, and numerous shortcomings in the healthcare system were reported. One of the most agreed upon challenges was coordination of healthcare contacts, and about a quarter disagreed that care is adapted to their needs or that they receive support in self-care. Conclusions: Our results suggest education efforts, especially those that support self-management and shared decision-making, are needed to reduce the time to diagnosis and increase care access and experience post diagnosis; this would likely increase trust and care satisfaction. Primary care should be a priority, as most respondents receive the majority of their care there, and trust rated the lowest for primary care.