Development of a Multidisciplinary Clinic for Patients with Ehlers Danlos Syndromes: Considerations and Strategies

Abstract

Ehlers-Danlos Syndromes (EDS) is a group of connective tissue disorders often encountered within rheumatology clinics and is associated with several overlapping symptoms, which may require attention from other medical subspecialities. Barriers exist to implementing multidisciplinary care for EDS, including a lack of knowledge, comfort, and time managing EDS. In the absence of multidisciplinary care, patients are often forced to self-coordinate care. This can lead to gaps in care and a lack of clarity of medical ownership over the patient’s care. Integrated multidisciplinary clinics are sorely needed, but the development and implementation of such clinics is limited by resources and personnel. As such, the development of a multidisciplinary clinic can be daunting and may serve to discourage providers with competencies in EDS from attempting to develop this service. In this editorial, we share our experiences in developing a multidisciplinary clinic for EDS at a moderately-sized children’s hospital, relying on several core disciplines with established EDS clinical loads (ie, rheumatology, cardiology, genetics, and psychology). We discuss considerations for the expansion of this service, pitfalls, and barriers throughout the development of the clinic, and our rationale underlying our process-related decisions. Development of a greater number of multidisciplinary EDS clinics, even in the potential absence of larger institutional support, is both possible and imperative for improving EDS care globally.

Keywords:

• Ehlers-Danlos
• hypermobility
• multidisciplinary
• pediatrics

Disclosure

Dr Eric T Rush reports grants and/or personal fees from Alexion AstraZeneca Rare Disease, Ultragenyx Pharmaceuticals, BioMarin Pharmaceuticals, Inozyme Pharma, Ascendis Pharma, Kyowa Kirin Pharmaceuticals, and Angitia Bio, outside the submitted work. The authors declared no other potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Additional information

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.