The GoodHope Ehlers Danlos Syndrome Clinic: development and implementation of the first interdisciplinary program for multi-system issues in connective tissue disorders at the Toronto General Hospital

Abstract

Ehlers-Danlos Syndrome (EDS) are a heterogeneous group of genetic connective tissue disorders, and typically manifests as weak joints that subluxate/dislocate, stretchy and/or fragile skin, organ/systems dysfunction, and significant widespread pain. Historically, this syndrome has been poorly understood and often overlooked. As a result, people living with EDS had difficulty obtaining an accurate diagnosis and appropriate treatment, leading to untold personal suffering as well as ineffective health care utilization. The GoodHope EDS clinic addresses systemic gaps in the diagnosis and treatment of EDS. This paper describes a leap forward—from lack of awareness, diagnosis, and treatment—to expert care that is tailored to meet the specific needs of patients with EDS. The GoodHope EDS clinic consists of experts from various medical specialties who work together to provide comprehensive care that addresses the multi-systemic nature of the syndrome. In addition, EDS-specific self-management programs have been developed that draw on exercise science, rehabilitation, and health psychology to improve physical and psychosocial wellbeing and overall quality of life. Embedded into the program are research initiatives to shed light on the clinical presentation, underlying mechanisms of pathophysiology, and syndrome management. We also lead regular educational activities for community health care providers to increase awareness and competence in the interprofessional management of EDS beyond our doors and throughout the province and country.

Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review

“…The support for a multidisciplinary approach can been seen throughout additional studies 70 , 71 , 72 as well as in practice at the GoodHope EDS Clinic at the Toronto General Hospital, providing the first 1-stop interdisciplinary model of health care delivery for EDS. 73 Together, emerging research and multidisciplinary program delivery may help to inform future screening, risk assessment, and intervention design and delivery in EDS.…”

Feasibility of video-based joint hypermobility assessment in individuals with suspected Ehlers-Danlos syndromes/generalised hypermobility spectrum disorders: a single-site observational study protocol

“…Approximately, 225 participants will be recruited from the pool of patients undergoing an initial physical examination at the GoodHope EDS Clinic at Toronto General Hospital. 3 …”

“…Often, hypermobility of other large and small joints not included in the Beighton score are also commonly assessed in specialised EDS clinics. 3 The Beighton score is a validated measure of generalised joint hypermobility, 4 however, there continue to be several challenges with its widespread and consistent application by clinicians. 5 While the Beighton score is only clinically validated when assessed using a goniometer, the use of goniometer is not standard practice for all clinicians, leading to inaccurate measurements and higher inter-rater variability in Beighton score reporting.…”

“…Often, hypermobility of other large and small joints not included in the Beighton score are also commonly assessed in specialised EDS clinics. 3 …”

The GoodHope Exercise and Rehabilitation (GEAR) Program for People With Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders

“…GEAR is a part of the GoodHope EDS Clinic that is situated in the Toronto General Hospital in Toronto, Ontario, Canada (details of the GoodHope EDS clinic are provided elsewhere) ( 21 ). GEAR is delivered in an exercise and rehabilitation facility of ~1,200 square feet where assessments, exercise and rehabilitation therapy, and consultations related to education and community resources are conducted.…”