Health-related quality of life in midlife and older women with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders
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An understudied area of gerontology is the impact of inherited genetic disorders as individuals age and how such conditions affect health-related quality of life (HRQOL) in older adults. Such is the case with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders (hEDS/HSD). This condition represents a spectrum of heritable connective tissue disorders characterized by joint instability, tissue fragility, chronic pain, and multisystem dysfunction, leading to disability and poor HRQOL. Symptoms are more prevalent and severe in women than men, and early signs and symptoms are subtle and mimic conditions commonly seen in adults. Researchers have yet to identify a hEDS/HSD confirmatory biomarker, so individuals experience long diagnosis delays. Researchers have conducted most hEDS/HSD studies on young adult samples, so little is known about its clinical presentation, illness progression, and HRQOL impact in midlife and older women. This cross-sectional internet survey of women over 40 diagnosed with hEDS/HSD (n = 66, age range 40-87) measured this population's demographic and health history using a custom instrument, symptom characteristics using the Multidimensional Health Assessment Questionnaire, environmental variables using the Craig Hospital Inventory of Environmental Factors, and HRQOL using the Short-Form 36. This study identified numerous comorbidities, extensive diagnosis delays, and lower physical and mental HRQOL than age and sex- matched norms. This research also showed that environmental factors can significantly impact physical and mental HRQOL, a topic not yet explored in hEDS/HSD literature. This study yielded a model based on the International Classification of Functioning, Disability and Health (ICF) framework identifying HRQOL barriers and facilitators that extend the knowledge of the natural history and illness trajectory of hEDS/HSD in midlife and older women. These results may lead to earlier diagnosis, more effective treatments, and better physical and mental HRQOL.
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Ph. D.