axSpA Delay to Diagnosis Global Forums

In autumn 2020, ASIF hosted two Global Forum events. These conferences brought together patients, healthcare professionals and representatives of patient organisations from 24 countries across five continents.

At the meeting on 13 October, Dr Dale Webb, Chief Executive of NASS (the UK’s patient organisation) presented what is known about the delay to diagnosis; he talked about findings from existing research, including the International Map of Axial Spondyloarthritis. You can watch his presentation below. We held a lively and valuable session, during which we separated into smaller groups each consisting of patients, rheumatologists, physiotherapists, patient organisation representatives and other healthcare professionals from different countries. The discussions focussed on:

  • How the delay to diagnosis effects patients
  • Why the delay occurs
  • And what diffrences and similarities occur between countries

You can watch a video here of Tone Foss Aspevoll, our facilitator for the day, as she presents a summary of our disccusions.

At our next meeting on 2 November, we heard from patients, researchers and doctors about their own experiences of the delay to diagnosis. Our break-out session at this event focussed on what practices, projects or programs of work around the world have been successful in reducing the delay. There was so much passionate discussion about what has worked; what could be done and what should change. We held a valuable panel discussion with Professor Marco Garrido-Cumbrera (founder of IMAS, patient and researcher at University of Seville); Paul Curry (patient and NASS Trustee); and Dr Uta Kiltz (ASIF Trustee, ASAS member and Professor of Rheumatology). The panel discussed some of the many issues raised during the Global Forum events and answered questions on some of the challenges that lie ahead.

You can watch a video of Jo Lowe, ASIF’s Project Manager, presenting a summary of the discussions from this event.

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