Closing the Knowledge Gap: Increasing Primary Care Provider Confidence in Ehlers Danlos Syndrome and Hypermobility Spectrum Disorder

Patients with Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) often experience a prolonged "diagnostic odyssey" before receiving appropriate care. A significant barrier to timely diagnosis and treatment is the limited knowledge and confidence among healthcare practitioners, despite the availability of established assessment and diagnostic guidelines. This pilot project applied the Mountain Model for evidence-based practice quality improvement (EBPQI) framework using the FADE (Focus, Analyze, Develop, Execute, Evaluate) Model for quality improvement in an independent family medicine practice. The intervention aimed to enhance primary care provider confidence in diagnosing EDS and HSD. To assess baseline knowledge and confidence levels, providers were surveyed using REDCap. Subsequently, a tailored educational presentation with supporting resources was developed and delivered in a hybrid-remote live session. Following the intervention, a post survey was administered to evaluate the session's effectiveness. Nine practitioners responded to the initial survey, and five participated in the post education survey. Results indicated that knowledge, measured on a 5-point Likert scale, increased by 116%, improving from a mean score of 1.44 to 3.12. Mean confidence in diagnosing EDS and HSD, developing treatment plans, and providing care increased by 77.9%, rising from 1.35 to 2.4. Furthermore, mean confidence in applying the hypermobile EDS diagnostic criteria improved by 131.4% for criterion 1 (generalized joint hypermobility assessment, from 1.56 to 3.60), 77.0% for criterion 2 (manifestations of a connective tissue disorder and musculoskeletal complications, from 1.83 to 3.24) and by 65.5% for criterion 3 (exclusion of alternative diagnoses, from 1.75 to 3.04). These findings suggest that a one-hour educational intervention can significantly enhance primary care providers' knowledge and confidence in diagnosing and managing EDS and HSD. Future research should explore the impact of this intervention on a larger sample of primary care providers to assess its broader applicability and long-term outcomes.