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Final Program


Final Program

647 - Evaluation of Multidisciplinary Hypermobile Ehlers-Danlos Syndrome Management and Patient Outcomes

Friday, February 28, 2025
5:00 PM - 6:30 PM MST
Objectives: Hypermobile Ehlers-Danlos syndrome (hEDS) is a connective tissue disorder characterized by widespread joint hypermobility and instability commonly affecting multiple organ systems and frequently presenting with comorbidities. Little is known about the p</span>atterns of medical visit utilization in hEDS patients and implications for patient outcomes.

Design: A retrospective electronic medical record review of hEDS patients was completed on patients followed in a physiatric clinic over a 1 year period. Deidentified data collected included demographic information, number of appointments with medical providers and skilled therapists in the past year, and functional status (through physician evaluations of function correlated with the Duke Activity Status Index). Relationships between variables were assessed.

Results: A total of 49 patient charts were reviewed. Patients were found to have an average of 16.90 (SD = 17.63) healthcare appointments in the past year, seeing an average of 5.02 (SD = 2.98) specialties. Primary care, neurology, and cardiology were most commonly visited. Patients seen by a primary care provider in the past year had an average of 21.31(SD = 16.68) healthcare appointments compared to 8.59 (SD = 16.75) for those who were not. No significant associations were found between age, number of specialties seen, and functional status.

Conclusions: Results from this retrospective review did not suggest correlation between frequency of healthcare appointments, number of medical specialties seen, and patient functional status, but did indicate a link between frequency of appointments and having seen a primary care provider. This data suggests that routine appointments with a primary care provider may enable greater access to health care but does not necessarily result in higher functional outcomes in patients with this diagnosis. Further evaluation with a larger sample size and additional health and function-related variables is warranted.