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
C2 - 34821464
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 -