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 and dealing with 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. You can read more about these stages of delay in the NASS Gold Standard Consultation document, which is available in the resources section below.
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 he or she is 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 a loss of job opportunities or an inability to work.
Delay to Diagnosis includes all aspects of the time from symptom onset until final diagnosis.
Cheryl Koehn, President of Arthritis Consumer Experts in Canada talks to Michael Mallinson about his own experiences during his delay to diagnosis. Michael is a former ASIF Trustee and current volunteer.
Raj Mahapatra, ASIF Trustee talks to Professor Marco Garrido-Cumbrera, patient, researcher at University of Seville and founder of IMAS.
Michael Mallinson talks to Dr Walter Maksymowych, Professor, Rheumatologist and co-founder of the Spondyloarthritis Research Consortium of Canada (SPARCC).
Michael Mallinson talks to Aleksei Sitalo, ASIF Trustee about the delay to diagnosis in Russia.
Our Delay to Diagnosis Campaign
We know from our member patient organisations 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 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. We are undertaking our Delay to Diagnosis project at the request of our member patient organisations, which recognise the adverse effects of a lengthy delay to diagnosis on patients and healthcare systems.
The overall objectives are to significantly reduce the average time to diagnosis internationally; and to globally raise awareness about the disease and detrimental effects of the delay, physically, psychologically and economically. We will do this by collaborating with researchers and our members, using and building on their work where necessary, to create an axial Spondyloarthritis Global Burden Statement. We will build awareness and advocacy tools for our members and others to use with all stakeholders to reduce the delay to diagnosis for axSpA patients everywhere.
We aim to
Gather data and other robust evidence that demonstrates the problem
Explore, and document, why the delay to diagnosis is so important
Better understand the reasons for the delay
Identify which practices have been effective, how they have worked and what else might be successful in reducing the delay
Understand delay differences and similarities around the globe
Review expert opinion and existing research on the delay
Identify ways to advocate for a reduction in the delay
Identify way to increase awareness of axSpA
Produce resources to support ASIF members in their work on reducing the delay
Why does this matter?
Globally, diagnostic delay in axSpA remains a significant challenge.
AxSpA is a disease that affects people at a pivotal phase in their life, with symptoms starting on average around the age of 26.
What is the impact on patients?
Suffering with undiagnosed severe pain, stiffness and fatigue 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.
axSpA Delay to Diagnosis Global Forums
ASIF has now hosted two Global Forum events, one each on 13 October and 2 November 2020. These conferences brought together patients, healthcare professionals and representatives of patient organisations from 24 countries across five continents.
At the meeting on 13 October 2020, 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 differences 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 discussions.
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.
World Health Organization Regions
Mean avarage delay to diagnosis in years
ASIF's Delay to Diagnosis project is supported by:
Neither have had influence or involvement in delivery of the project.