The Unacceptable Delay in Axial Spondyloarthritis Diagnosis: A Global Call to Action
Axial Spondyloarthritis International Federation (ASIF). (June 2021) The unacceptable delay in axial spondyloarthritis diagnosis: A Global Call to Action. https://asif.info/delay-to-diagnosis-report/
The contents of this report will help to build a clearer picture of what axial spondyloarthritis (axSpA) is and how its burdens manifest themselves. It will also set out the barriers that exist to achieving timely diagnosis, alongside examples of best practice from across the world in reducing diagnosis delay. These insights help to inform the key recommendations and the accompanying call to action for all stakeholders involved in the organisation, delivery and championing of axSpA care. The report forms a key component of ASIF’s Delay to Diagnosis campaign. The campaign seeks to deepen understanding at a global level of the factors that contribute to the current seven-year average delay in axSpA diagnosis, and the burdens that the delay places on individuals.
Axial spondyloarthritis (axSpA) encompasses a range of chronic, progressive inflammatory conditions that place a huge toll on the millions of people affected by the disease across the globe. Much of the burden comes from the considerable delay in achieving a confirmed diagnosis, which is currently around seven years on average from the first onset of symptoms. Axial spondyloarthritis (axSpA) currently remains incurable, however there has been considerable progress in recent decades in our understanding of the disease, and improvements in the tools we have available to treat it. Despite these advances, progress across the world has unfortunately been much more limited in achieving timely axSpA diagnosis. Ultimately, patients diagnosed in recent years experience very similar delays to those in the 1990s and 2000s.
ASIF and the axSpA stakeholder community believe that this is an unacceptable reality and one that must urgently be addressed. Achieving progress is particularly important because of the early onset of the disease – typically manifesting when someone is in their twenties – and its progressive nature. The longer it takes to achieve a diagnosis, the worse a patient’s condition will likely become. Waiting seven years for a diagnosis can lead to irreversible damage and will often transform a young person’s life into a period of intense physical and mental hardship.
Undiagnosed and poorly managed axSpA will not only limit an individual’s ability to fully participate in society and maintain meaningful employment. It will also generate additional healthcare needs and costs, meaning that there is a clear moral as well as economic obligation to reduce diagnosis delay.
As set out in this report, diagnosing axSpA is not a straightforward process and there are a number of challenges that need to be overcome if the seven-year delay is to be reduced. Despite this, we have a better understanding of these barriers than ever before, and there are also encouraging signs of progress from across the world on how to address them. Our hope is that we can now build on this to help ensure all healthcare systems give axSpA the priority it deserves; and to create a future where no one living with the condition has to wait seven years for a diagnosis.