What is it?
The Hypermobility Screening Tool (HST) is a new screening tool for hEDS/HSD introduced in July 2022 that is still undergoing study. It is not to establish diagnosis directly, but rather a tool to help healthcare providers to refer for possible diagnosis and to establish an appropriate healthcare team. It is important to note that it has not yet been proven to be a good tool, but we are starting the research to determine its usefulness. We still need to acquire funding to study the HST further.
A bit of background...
In July 2022, Orthopaedic Physical Therapy Practice (OPTP) published its first edition on circus artists, edited by Stephanie Greenspan (Artletic Science (https://artleticscience.com,) Samuel Merritt University.) With Annie Squires (Spaulding Rehabilitation Hospital,) the three of us co-authored the paper Management of Hypermobility in Aesthetic Performing Artists: A Review. https://www.orthopt.org/content/publications/publications-archive (2022, Volume 34 Number 3)
As we were writing, when it came time to detail all the comorbidities and symptoms associated with hEDS/HSD, Stephanie raised the question, "what if we made this a tool that clinicians could use?" We reviewed much of the hEDS/HSD literature, and came up with two checklists; one of symptoms (the patient's experience) and one of comorbidities (other diagnoses that medical providers have assigned.) The last page of the HST talks about what to do with this information, including a chart of possible healthcare professionals to whom a provider could refer.
Our research with the HST has only started, so why release a version now?
We know that there are many in the hEDS/HSD community who are struggling for validation, understanding, diagnosis and management. We hope that releasing this early version will allow for a starting point for conversations with healthcare providers and support the patient who may not have access to expert providers due to time, money or distance.
We also hope that the tool is easy to use and saves time during the patient interview, thereby making things easier for the healthcare provider. For those of us with experience treating hEDS/HSD, we know that good history taking is critical but also potentially time consuming; for those without experience in this particular population, it can be hard to know where to start and how to prioritize. We hope the HST is helpful to both types of providers.
When our interview on the Bendy Bodies Podcast aired in October 2022, the editors of OPTP became aware that there was interest in access to the HST. In response, the editors graciously released the HST for educational purposes, which you can access below.