Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders

Authors

Jane R. Schubart, Department of Surgery, Division of Outcomes Research, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA; Department of Public Health Sciences, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA
Rebecca Bascom, Department of Public Health Sciences, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA; Department of Medicine, Division of Pulmonary, Allergy and Critical Care, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA
Clair A. Francomano, Department of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, Indiana, USA; The Ehlers-Danlos Society, New York, USA and London, UK
Lara Bloom, The Ehlers-Danlos Society, New York, USA and London, UK; Department of Medicine, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA
Alan J. Hakim, The Ehlers-Danlos Society, New York, USA and London, UK; Department of Medicine, The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA

Document Type

Article

Publication Date

2021

Abstract

The Ehlers-Danlos Society Extension for Community Health Care Outcomes (EDS ECHO) is a portfolio of teleconferencing programs developed around the principles and practices of Project ECHO®, aimed at increasing awareness of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) among clinicians, enhancing their confidence in the assessment and management of these complex conditions, and generating networks of clinicians across specialties. We assessed the outcomes of the first EDS ECHO program, launched in April 2019, with two hub locations: Indiana University Health, Indianapolis, Indiana, USA, and The Royal Society of Medicine, London, UK. Clinicians were surveyed before and 6 months after their participation. We describe the initial outcomes of the first four EDS ECHO programs, each comprising nine sessions. Participants reported increased levels of knowledge and confidence in providing care (93% and 95%, respectively) and an increase in referral network participation (65%). Additionally, 80% reported that their interest in EDS and HSD increased; 57% reporting a great increase. Also, 59% reported a decrease in feeling overwhelmed by EDS and HSD, and nearly half reported a decrease in their level of frustration because of participating in EDS ECHO. Clinicians participating in EDS ECHO programs know more, have more confidence in their ability to provide care, and feel energized by their participation.

Comments

This article is an extension of either a plenary guest speaker lecture or an abstract presented at the EDS ECHO Conference on the Ehlers Danlos Syndromes held 2–3 October 2020. The Editors-in-Chief of this journal affirm that this article was evaluated editorially and rigorously edited by the expert Guest Editors for this issue, Dr. Hakim, Dr. Francomano, and Dr. Tinkle and was not anonymously peer reviewed.

Recommended Citation

Schubart, J. R., Bascom, R., Francomano, C. A., Bloom, L., & Hakim, A. J. (2021). Initial description and evaluation of EDS ECHO: An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 187C:609–615. https://doi.org/10.1002/ajmg.c.31960