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

TY - JOUR

T1 - Initial description and evaluation of EDS ECHO

T2 - An international effort to improve care for people with the Ehlers-Danlos syndromes and hypermobility spectrum disorders

AU - Schubart, Jane R.

AU - Bascom, Rebecca

AU - Francomano, Clair A.

AU - Bloom, Lara

AU - Hakim, Alan J.

N1 - Funding Information: Dr. Schubart and Dr. Bascom received funding from the Ehlers‐Danlos Society to perform this evaluation. They independently designed and administered the evaluation and analyzed the data. The EDS ECHO Program was developed and implemented by Ehlers‐Danlos Society leaders Dr. Alan J Hakim (Director of Education), Lara Bloom (Chief Executive Officer) and Dr. Clair A. Francomano (Chair of the Medical and Scientific Board). Through the Ehlers‐Danlos Society, a non‐profit charity registered in the USA and UK, philanthropic donors provide support, including the funding for this study, for EDS ECHO. Publisher Copyright: © 2021 Wiley Periodicals LLC.

PY - 2021/12

Y1 - 2021/12

N2 - 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.

AB - 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.

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U2 - 10.1002/ajmg.c.31960

DO - 10.1002/ajmg.c.31960

M3 - Article

AN - SCOPUS:85120612871

VL - 187

SP - 609

EP - 615

JO - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics

JF - American Journal of Medical Genetics, Part C: Seminars in Medical Genetics

SN - 0897-4438

IS - 4

ER -