Referral declined | EDSClinic

Common reasons referrals to the GoodHope EDS clinic are declined

You do not have an active primary care provider involved in your care which is required for assessment/treatment in the Good Hope EDS clinic.

You do not have evidence of generalized joint hypermobility as assessed by the Hypermobility Assessment Tool App (HAT app).

You do not have features suggestive of hEDS or genetically identifiable (rare) EDS subtypes (the referral form is built to screen for rare EDS subtypes in addition to hEDS).

My referral was declined because the Hypermobility Assessment Tool App (HAT) showed that my Beighton score was low. What does this mean?

The HAT app is a Health Canada Class 1 medical Device and is distributed by the University Health Network.

The HAT app has been built to screen for generalized joint hypermobility. It has been proven to correctly identify generalized joint hypermobility with >90% effectiveness.

The HAT app has been built to “err on the side of caution” leading to occasionally reading the Beighton score as higher (but never lower) than it is.

The Beighton score remains the only tool used to screen for generalized joint hypermobility as outlined in the international EDS consortium 2017 diagnostic criteria of for hEDS.

I used to be more hypermobile in the past, how do you account for this?

The Beighton score accounts for a decrease in hypermobility as we age. Your age is considered when referrals are triaged by our program.

You may have had your hypermobility assessed in the past and were told that your Beighton score was higher then it was assessed on the app. This may be due to the fact that your mobility was screened by visual inspection only. “Eyeballing” the range of motion of a joint commonly leads to inaccurate, overestimation of joint hypermobility. The HAT app assesses for an objective, measurable degree of hypermobility which is more accurate than visual assessment of hypermobility.

To accurately diagnose hEDS/G-HSD, hypermobility must currently be present and measurable.

What should I do now that my referral has been declined?

Work with your primary care provider to understand your major health issues and seek support from allied health or specialist teams to assess and manage your health.

Some patients benefit from referral to a comprehensive multidisciplinary OHIP funded pain clinics such as TAPMI in Toronto and Micheal De Groote pain centre in Hamilton etc.

EDS cannot be accurately assessed or diagnosed virtually. Virtual EDS assessment and diagnosis may not be recognized by our program.