Delay to Diagnosis Project – News Update

 

 

ASIF’s Delay to Diagnosis project focusses on the unacceptable delay in receiving a diagnosis that most patients with axSpA must endure. Through the project, we aim to better understand why the delay to diagnosis occurs; how this affects patients, their families and friends and healthcare systems. Crucially, we must decide collectively what ASIF can do raise awareness and to support our members globally in tackling this burden that axSpA patients face.

 

The project, which launched early in summer this year, has achieved a lot in a short space of time. Most notably, we hosted two international Global Forum events in the autumn, which were a huge success, and we are very pleased to have received positive feedback from everyone involved. The events brought together patients, researchers, rheumatologists, physiotherapists and other healthcare professionals to discuss the delay to diagnosis around the world. We were delighted to have participants from Argentina to Australia – and many countries in between! In total, we welcomed 48 delegates from 23 countries across five continents. We thank, in particular our Asian and Australian representatives who had to stay up very late!

 

Dr Dale Webb, CEO of NASS (the UK patient group) gave a presentation on the existing research evidence and what it tells us about the delay to diagnosis. Included in this is data from the IMAS project, evidence collected directly from patients about living with axSpA. We held break-out discussions during which we collectively explored the reasons that the delay to diagnosis occurs – almost without exception – around the world. In understanding the reasons for the delay, we can start to identify ways to tackle it. We heard time and again from patients of the suffering they had endured in waiting for their diagnosis. But, we also heard about some positive steps taken in certain parts of the world where small projects or schemes had led to some success in reducing the delay.

Dr Dale Webb presents at the ASIF axSpA Global Forum event on 13 October 2020

We will launch dedicated webpages on the ASIF website very soon, where you can read in more detail about the project and keep up to date with developments. There you will also find resources on the delay to diagnosis, including links to the existing research, videos and infographics that can be tailored to your requirements.

 

During this initial phase of the project, we have also asked our member organisations to tell us more about the delay to diagnosis in their country and have collated and reviewed the existing research. We are now producing our final report from this stage of the Delay to Diagnosis project; this will be the definitive report on the impact of axSpA globally. We will highlight – most importantly – the burden on patients who wait too long for their diagnosis. This burden statement will be launched in spring of 2021 and we will use the knowledge gathered during this phase of the project to agree what work is most needed in the next phases of the Delay to Diagnosis project.

 

Stemming from ideas and discussions at the Global Forums and from existing research, we will explore ideas on how to take forward the project. We could look at how to support our members with better messaging to policymakers; we might develop a toolkit that can be tailored by countries to international or regional campaigns; we could help by making videos about the disease symptoms to raise awareness in the general public and alert people to the possibility that they have axSpA.

 

We will consider a range of ideas and explore how we build a project or programme of work around them. Most importantly, we will consult with our members to find out what would be most useful and how they can get involved in the ongoing project. For now, ASIF would like to say a huge thank you to everyone that has been involved so far and we look forward to continuing this essential work. Together, we can – and must – create a better experience for axSpA patients. 

 

We have heard throughout the Global Forums how many barriers we face in reducing the delay to diagnosis. Here at ASIF, we understand that this project should develop and grow to support our members in tackling these obstacles. We thank you again for your participation and look forward to working with you to achieve our goal.

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