P545: Establishment of a streamlined hypermobility clinic at a hybrid community/academic medical center

Introduction: Hypermobility and concern for hypermobile-type Ehlers-Danlos syndrome (hEDS) are common indications for referral to Medical Genetics.However, given limited clinical resources, challenges with access to care, and controversial role for genetic testing, many Medical Genetics clinics do not accept these referrals.As such, this represents an area of un-met need within our field.We sought to establish a streamlined hypermobility clinic within our hybrid community/academic medical center to effectively and efficiently meet this need within the bounds of clinical capacity.Methods: In late-2024, we established a focused hypermobility clinic.Patients 18 years of age and older without an existing diagnosis of hEDS and with a prior echocardiogram completed could be referred by their primary care or specialty care provider.Patients were required to complete a pre-clinic survey, which consolidated their medical history, review of systems, family history, and goals of care/diagnosis.Cases were reviewed in pre-clinic meetings for "red flag" signs/symptoms that might suggest an alternative connective tissue diagnosis (Marfan syndrome, other Ehlers-Danlos syndromes, etc) and guide need for genetic testing.Clinic days consisted of ten appointment slots of 60 minutes each, 30 minutes for the genetic counselor (who contracted with the patient, clarified history, and discussed the hypermobility spectrum) and 30 minutes for the physician (who performed a focused physical examination, applied the published 2017 hEDS diagnostic criteria, and provided resources regarding the diagnosis).Templates for documentation within the electronic medical record were utilized to minimize post-visit documentation burdens.We then utilized an IRB-approved, retrospective chart review to analyze patient features, diagnostic outcomes, and healthcare delivery data from our first year (2025).Results: De-identified analysis of referral patterns from 2021-2024 identified that our clinic averaged 3,812 referrals annually, of which an average of 367 were for hypermobility/hEDS-related indications (9.6%).Our clinic did not assess or diagnose hypermobility or hEDS; therefore, only an average of 59 referrals annually (16% of this group) were accepted for consultation.These were generally accepted for other indications, including family or personal aneurysm history.During our first year of hypermobility clinic, 94/100 scheduled consultations were completed.This no-show/late cancel rate of 6% was far lower than that of our general clinic, which averages 14%.Evaluated patients identified themselves as 89% female, 5% male, and 6% gender non-binary or transgender.The average age was 31.2 years.The most common presenting symptom was chronic pain (94%).On evaluation, Beighton scores ranged from 0-9, with a mean of 4.9 and median of 5. Ultimately, there were 27 (29%) diagnoses of hEDS, 40 (43%) diagnoses of hypermobility syndrome, and 1 diagnosis of something else (what was it?).Twenty-six patients (28%) did not meet criteria for a hypermobility-related diagnosis.On average, the clinic generated $3871 in physician charges and 20 wRVU per session. Conclusion:Here, we present the first year of our experience with developing and deploying a clinical structure which sought to address unmet needs for hypermobility evaluation while being cognizant of limited clinical resources.While demand continued to exceed appointment availability, this approach was an important first step towards addressing a large gap in currently accessible care.It also provided benefits for referral triage and medical genetics clinic workflows.Additional work is needed to measure how well this structure met individual patient needs and perception by providers.