About diagnostic delay
7.4 years is the average global delay to diagnosis
This is unacceptable and must change.
Delay to Diagnosis refers to the time from onset of symptoms of axial spondyloarthritis (axSpA) until diagnosis of the disease. On average, women wait two years longer than men. Whilst waiting for a diagnosis, the disease, and a person’s corresponding prognosis, can worsen significantly. Data from the International Map of Axial Spondyloarthritis (IMAS) suggests that people with longer diagnostic delays are at increased risk of the disease being more severe. This means they may experience worse pain, fatigue and stiffness, and have more comorbidities. Early and accurate diagnosis is crucial to people receiving effective treatment and early diagnosis is closely associated with better outcomes for individuals.
Below are the regional average delays gathered from the IMAS study.
| Participant Region | Average diagnostic delay (years) |
|---|---|
| Europe | 7.7 |
| Asia | 4.2 |
| North America | 9.0 |
| Latin America | 5.9 |
| South Africa | 10.8 |
And here, we can see how closely associated diagnostic delays are with spinal stiffness and functional (physical) limitation.
| Spinal Stiffness Index | Average diagnostic delay (years) |
|---|---|
| No restriction | 3.7 |
| Mild | 5.4 |
| Moderate | 7.5 |
| Severe | 9.1 |
| Functional Limitation Index | |
| Low | 6.2 |
| Medium | 8.2 |
| High | 9.5 |
Individuals with symptoms of pain, stiffness, fatigue and no diagnosis suffer through loss of quality of life and the associated psychological turmoil. Diagnostic delay is also costly to healthcare systems, because people seeking to understand their symptoms often visit numerous healthcare professionals prior to a correct referral and diagnosis.
The impact
In this short film, ‘Me, myself and axSpA’, we hear from four people from different parts of the world, who tell their own story of living with undiagnosed axSpA and how they eventually responded to the diagnosis.
Watch more people share their stories of emotional turmoil and putting their lives on hold whilst they tried to find a diagnosis for their symptoms.
Maranda tells us about the impact the eight year delay to diagnosis had on her life, and explains why she now feels motivated to help raise awareness of the need for earlier, accurate diagnosis of axSpA.
Watch Annie’s film to learn how a delay of many years deeply affected and impacted all aspects of her life. Annie shares her thoughts about how a quicker and accurate diagnosis leads to more life choices and an improved life.
Kel talks about the turmoil of living with axSpA for a decade without a diagnosis; and in particular the psychological burden of this delay.
Why does it take so long
to get a diagnosis?
In our report, ‘The unacceptable delay in axSpA diagnosis: a global call to action’ we identify six barriers to a timely diagnosis:
1: Limited awareness of axSpA amongst those with symptoms
For a huge majority of people, it will not be clear what the first signs and symptoms of axSpA are. In cases where there isn’t already an existing axSpA diagnosis amongst a close friend or family member for instance, individuals are likely to attribute the early onset of the disease to general back pain or other common aches. This is particularly understandable considering that back pain is estimated to affect as many as 80-90% of adults at some point in their life.
2: Lack of axSpA understanding amongst the general population
Limited axSpA awareness at an individual-level is fundamentally linked to a broader lack of knowledge and understanding of axSpA amongst the general population. Compared to many ‘higher-profile’ health areas, such as cardiovascular disease, cancers and neurodegenerative disorders, axSpA is very rarely talked about in public or featured in high-profile awareness campaigns.
3: Incorrect/misdiagnosis at first point of healthcare system contact
When someone with axSpA initially seeks professional healthcare support, it is very likely that they will see a primary care doctor or general practitioner. There is a low level of axSpA awareness amongst non-specialist healthcare professionals. This means that people are unlikely to be referred to a specialist to investigate the presence of axSpA and are more likely to be treated for mechanical back pain. In the next section, Dr Raj Sengupta explains in more detail why the disease can be so difficult to diagnose.
4: Pathway and referral challenges
Even when an individual is referred onwards for further investigation, in many cases it is to a non-rheumatologist or a specialty without appropriate knowledge or expertise. It is common for people with axSpA to be incorrectly referred onto, and treated by, a range of non-specialist medical disciplines and providers. These include chiropractors, orthopaedists, pain management clinics and even psychiatrists or alternative medicine practitioners. Non-rheumatologists however are less likely to have the knowledge or access to the diagnostic tools needed to distinguish the inflammatory nature of axSpA from mechanical forms of back pain.
5: Challenges in accessing specialist care
For many people across the globe, accessing the expert care required to achieve axSpA diagnosis can be an almost insurmountable barrier. In healthcare systems where access to care requires payment, those without some form of medical insurance will quite simply not be able to afford the costs associated with investigating the presence axSpA. This reflects the complex nature of the disease and the multiple steps involved in accurately diagnosing it.
In addition to the financial barrier, there are geographical challenges, particularly for people in rural parts of the world. Some people have to go extreme distances and need to spend days to travel to a healthcare professional with the necessary expertise. Added to that, even amongst the best-resourced healthcare systems, the number of rheumatologists per head of population is lower than many other specialties.
6: Challenges within rheumatology
While early referral to a rheumatologist significantly reduces axSpA diagnosis delays, being seen by a rheumatologist still does not guarantee swift diagnosis. This is largely due to the complexity in diagnosing axSpA. There is no single definitive test for the condition. Instead, diagnosis needs to be informed by a number of different criteria, including physical examination, blood tests (to look for inflammatory markers and the HLA-B27 gene associated with the condition), as well as X-rays and magnetic resonance imaging scans (MRIs), which are often in short supply in many parts of the world.
The Research
English (UK) As we have read, diagnosis of axSpA can be difficult. Individuals with the disease and healthcare professionals face many challenges. As well as appropriate referrals not being made, misdiagnoses by doctors are also common. In our IMAS survey, the most common misdiagnoses were general back problems; rheumatoid arthritis; sciatica; and even anxiety or depression.
In this film, aimed at healthcare professionals, Dr Raj Sengupta, an axSpA-expert rheumatologist, outlines the way the disease presents clinically, challenges in diagnosing and the importance of achieving a timely diagnosis. He is supported by four patients illustrating his points by talking about their own symptoms and diagnosis.