Hypermobile Ehlers-Danlos syndrome/hypermobility spectrum disorders in older women: A feasibility study.

Introduction: Hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders cause joint instability, chronic pain, fatigue and progressive multisystemic dysfunction, increasing symptom burden and decreasing quality of life. Researchers know little about how these disorders progress in women as they age.

Objective: This research aimed to determine the feasibility of an internet-based study to understand the clinical characteristics, symptom burden and health-related quality of life in older women with symptomatic hypermobility disorders.

Methods: This cross-sectional, internet-based survey studied recruitment methods, suitability and usability of survey instruments and obtained baseline data on women aged 50 and older with hEDS/HSD. Researchers recruited participants from a Facebook group for older adults with Ehlers-Danlos syndrome. Outcome measures included health history, the Multidimensional Health Assessment Questionnaire and the RAND Short Form 36 health survey.

Results: Researchers recruited 32 participants from a single Facebook group within 2 weeks. Nearly all participants were satisfied with the survey length, clarity and navigation, with 10 participants providing free-text recommendations for survey improvement. The survey suggests a high symptom burden and poor quality of life in older women with hEDS/HSD.

Conclusion: The results support the feasibility and importance of a future internet-based comprehensive study about hEDS/HSD in older women.