Spondyloarthritis - The Ongoing issue of Delayed Diagnosis
Even today there is still a worrying delay in the diagnosis of Spondyloarthritis across many Health Care Systems, the UK included. Inflammatory back pain and enthesitis are key early manifestations of the inflammatory musculoskeletal condition Spondyloarthritis, but when doctors don’t recognise these symptoms there can be a delay in diagnosis – for example the median delay from first symptoms to a formal Spondyloarthritis diagnosis is a staggering 5 years in the UK (1) which is similar to the delay in other health care systems such as in The Americas, Asian countries and in Europe.
Currently, people wait an average of 8.5 years for a diagnosis and the research shows that:
This delay costs the economy an estimated £18.7 billion per year
A patient aged 26 who waits 8.5 years for a diagnosis is likely to lose around £187,000
By driving down the average diagnosis time to one year, the UK economy could save £167,000 per person.
NASS has created a learning module for GPs, for learning and to address the issue of missed and late diagnosis (Summary of Axial Spondyloarthritis | RCGP Learning)
1. Spondyloarthritis in Women - especially under-detected
Looking back at affected people, once spondyloarthritis is eventually diagnosed, we see that diagnostic delay is worse for women (2); associated with more disability (as the disease has progressed without treatment for many years); and implies a worse quality of life(3).
The data for women are troubling. Overall studies show that a delay in diagnosis of Spondyloarthritis occurs either because people do not consult health care professionals about their symptoms, or do so but then fail to be diagnosed, or correctly diagnosed. The latter happens far more for women than it does for men. Why? The type, range and severity of symptoms are the same for women and men in the early stages of the condition. We have to ask then, is it that women’s symptoms are not taken as seriously as men’s by doctors, or perhaps symptoms are not investigated as readily? Or both?
2. Unnecessary suffering
Unfortunately, a delay in diagnosis of Spondyloarthritis means the disease can progress leading to chronic pain, chronic fatigue, permanent skeletal structural changes and disability. Importantly, the condition is left unchecked and untreated despite the availability of generally good treatments. Moreover, when people who have experienced a delay in diagnosis do eventually get appropriate health care, their Spondyloarthritis prognosis is recognised to be worse (because of the progression of the condition because of the delay in diagnosis).
Notably also, the core Spondyloarthritis symptoms: inflammatory back pain and enthesitis (4) are part and parcel of early Psoriatic Arthritis and Inflammatory Bowel Disease related arthritis too – conditions considered within the spectrum of Spondyloarthritis-related conditions, and where diagnostic delay is a recognised problem also. Here are three examples of this:
Areas of erosion and osteoproliferation of the pelvis (arrowed). Multiple sites of pain. Hip joints are relatively good though. The areas of osteoproliferation occur at sites of enthesis inflammation.
The above X-Ray image is of the pelvis of a woman in her mid-50s who was suffering chronic hip pains. GP and then physiotherapist assessment could not find any problems in her hip joints on examination, and she was sent back home, but the pain persisted - for many years. When she returned again with her (same) complaints of pain the GP referred her for an X-Ray, but the X-Ray was reported normal. What were missed, were the numerous areas of bony changes (termed osteoproliferation) caused by the psoriatic arthritis. For many years the correct diagnosis had not been made and the treatments to treat the condition, denied her as a result.
The X-Ray image below shows the great toe of a man in his 40s who reported pain to his GP, who referred him for X-Ray, suspecting arthritis in the joints. The X-Ray was reported as ‘mild degenerative joint disease’ (osteoarthritis). But actually, the image shows relatively good appearances of the joints but does show enthesitis (the ‘fluffy’ appearance of the bone edge on the left of the image, which represents bone surface erosion and new bone proliferation. So not an arthritis – an enthesitis! Enthesitis is invariably indicative of Spondyloarthritis and psoriatic arthritis. So, an opportunity to diagnose the condition correctly was missed.
Pain and swelling in a toe can be due to spondyloarthritis or psoriatic arthritis. It isn’t always osteoarthritis or gout. The changes are in the bone and away from the joint on the left (enthesitis and periostitis)
Finally, the X-Ray image of the neck below is of a man in his 60s. There are subtle areas of abnormal bone growth (called syndesmophytes) between vertebral bones, which in effect fuse the vertebrae, which have caused this man considerable discomfort and stiffness of movement. For many years the diagnosis of spondyloarthritis was not made (and treatment therefore denied) because the X-Rays were reported as ‘degenerative disease’ only.
Syndesmophytes (bone spurs between vertebral bones) are not ‘degenerative’ . They usually indicate there is underlying spondyloarthritis in young people
3. Spondyloarthritis Costs Us All
Taken together the spectrum of Spondyloarthritis-related conditions affect 0.8-1.7% of the population overall (5). That is one in 60 to one in 120 of the whole population, including children. So, this issue is an important one and represents an important ‘miss’ of health care and health care professionals.
Quite apart from the personal cost in loss of health and wellness to those who suffer a delay in diagnosis, it costs the economy and the NHS too. Loss of ability to work, absenteeism from work and cost to the tax-payer are all knock on effects of late diagnosis, given that the disease can often be more costly to treat once it is diagnosed at a relatively more advanced state.
4. Why is there a delay in diagnosing Spondyloarthritis?
One major reason is a lack of knowledge of Spondyloarthritis by health care professionals (GPs, physios, osteopaths, radiologists, spinal specialists and orthopaedic doctors) who routinely encounter people with inflammatory back pain and enthesitis at the outset of the condition, or are involved in the investigation of initial symptoms, without fully understanding what they are looking for.
Better knowledge among health care professionals might not be the only improvement needed, however. A general delay in Spondyloarthritis diagnosis was recognised many years ago, and frankly, there has been slow progress improving the professional health care education about Spondyloarthritis. Local health care systems need to improve along with the acknowledgement that there is, and perhaps always will be, human error.
Perhaps it’s time then for a ‘systems-based’ approach to diagnosing Spondyloarthritis. A UK template for this already exists (6). Its application is predicted to include increased quality of life for people, reduced Spondyloarthritis disease progression and disability and reduced inappropriate investigations and treatments. To ensure its application, local, and insurance-based, health care funders should insist health care providers not only task their health care professionals to learn more about Spondyloarthritis and its key symptoms, but also to apply a system-based health care process and raise standards of care.
1. https://academic.oup.com/rheumatology/article/54/12/2283/1793449,
2. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0205751
3. https://pubmed.ncbi.nlm.nih.gov/31965538/
4. https://onlinelibrary.wiley.com/doi/pdf/10.1002/acr.23174