What is Delay to Diagnosis?
Delay to Diagnosis refers to the time from onset of symptoms of axial Spondyloarthritis (axSpA) until diagnosis of the disease, usually by a rheumatologist, but sometimes by another healthcare provider. Worldwide, the delay to diagnosis averages about seven years - with women taking two years longer than men to be diagnosed.
There are several stages in the delay to diagnosis, including a delay in the patient recognising that their symptoms require medical attention. There is a delay in the primary care provider (usually a GP) recognising axSpA and making a correct referral; there is a further delay in obtaining a final diagnosis after referral to the correct specialist - usually a rheumatologist.
The delay to diagnosis is important because it is known that the earlier the diagnosis, the sooner treatment can start and the better the outcome will be for the patient.
A delay in diagnosis is costly, because of increased visits to healthcare providers and excessive testing. It is also costly to the patient because they are impacted by a loss in quality of life and may experience many things like chronic pain, fatigue, mental health issues, difficulties with relationships and social life, as well as lost jobs opportunities or an inability to work.
Delay to Diagnosis includes the time from symptom onset until final diagnosis.
Our Delay to Diagnosis Campaign
We know from our member patient organisations and scientific literature that the lengthy delay to diagnosis in axSpA is a global problem that has been apparent for decades. And yet, even with the introduction of modern technologies, the time to diagnosis has not reduced very much - if at all - in many countries. We also know that, on average, women can take two years longer than men to be diagnosed. The delay to diagnosis in axSpA patients is longer than that of other rheumatic diseases and is acknowledged as a problem by rheumatologists and other healthcare professionals. In autumn 2020, we held two global forum events to discuss the delay with our members and other expert stakeholders. We focussed on the reasons for the delay, the impact and what we can do to tackle this huge challenge. You can read more about our global forum events here.
The overall objectives of the campaign are to significantly reduce the average time to diagnosis; and to globally raise awareness about the disease and detrimental effects of the delay, physically, psychologically and economically. We will do this by providing tools to support our members' work and collaborating with other expert stakeholders. We will build awareness and advocacy tools for our members to use with a range of audiences to advocate to reduce the delay to diagnosis for axSpA patients everywhere.
In 2023, we launched a Toolkit of awareness and advocacy materials, including videos, infographics and social media content. This followed the first stage of our campaign which culminated in the publication of our Delay to Diagnosis report.
We will continue to
Identify ways to advocate for a reduction in the delay
Identify ways to increase awareness of axSpA
Produce resources to support ASIF members in their work on reducing the delay
Identify which practices have been effective, how they have worked and what else might be successful in reducing the delay
Gather and review data, research and expert opinion on the delay
Explore, and document, why the delay to diagnosis is so important
Why does this matter?
Globally, diagnostic delay in axSpA remains a significant challange.
AxSpA is a disease that affects people at a pivotal phase in their life, with symptoms starting on average around the age of 26.
The average global delay to diagnosis is around 7 years.
What is the impact on patients?
Suffering with undiagnosed severe pain, stiffness and fatique often leads to depression and anxiety. The delay can lead to significant disease progression, even causing permanent disability. Quality of life is also severely impacted by people experiencing symptoms without effective treatment.