To improve outcome in arthritis, we must tackle delays in diagnosis
For today’s blog post we interviewed two experts in spondyloarthritis:
Dr William Tillett, consultant
rheumatologist at the Royal National Hospital for Rheumatic Diseases,
Bath, UK, and senior lecturer in the Department of Pharmacy and
Pharmacology at the University of Bath.
Michael Mallinson, a patient advocate who has lived with axial spondyloarthritis for over 35 years. He is former President of the Canadian Spondylitis Association and former Secretary and Trustee of, and current volunteer with, the Axial Spondyloarthritis International Federation (ASIF).
Debilitating pain. Stiff joints. Reduced mobility.
This is the daily reality for patients with spondyloarthritis. The condition, as the name hints, is part of the arthritis family of diseases. It affects millions of people worldwide, yet many are unfamiliar with it, causing delays in diagnosis that make patient outcomes worse.
World Arthritis Day provides us with the perfect moment to take a much-needed closer look at spondyloarthritis (SpA) and two subsets of that disease: psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA). Can you explain what each disease is and the difference between the two?
Dr. Tillett (WT): PsA is a form of arthritis associated with psoriasis that causes pain stiffness and swelling of the joints, tendons and spine.
Michael Mallinson (MM): axSpA primarily affects the spine and the pelvic joints, which makes back pain the defining patient complaint.
How do these diseases affect the day-to-day quality of life for patients?
WT: What we hear time and again is about ability to just participate in everyday things like socializing. Patients live with pain, fatigue, disturbed sleep, and often experience anxiety and depression about their condition.
Michael Mallinson (MM): People are in pain. They're very fatigued and they're desperate. This disease needs holistic treatment. For example, eye inflammation is a common symptom of axSpA, as is inflammatory bowel disease or Crohn's disease. So, a patient with SpA needs to have not only a general practitioner (GP), but also a rheumatologist, gastroenterologist, cardiologist, etc.
WT: There's a building body of research over the last 10 years, globally, showing that the longer people experience symptoms before they get a final diagnosis of SpA and start treatment, the worse the outcome.
MM: Worldwide, the delay to diagnosis is between seven and 10 years. We know that the more healthcare providers people see, the longer that delay is because it takes longer to see a rheumatologist.
What are the bottlenecks that delay diagnosis, and what are the interventions that are needed to fix that?
MM: Primary care providers are not very familiar with the red flags, and that's due to a lack of training in diagnosing and treating axSpA. Most people in their lifetime will go to their doctor about some sort of mechanical back pain, from a bad golf swing, moving awkwardly while vacuuming, or similar. Only about 1% will have inflammatory back pain, which is axSpA. But the signs are pretty simple: morning back stiffness that is only eased with exercise, back pain that lasts for more than three months with treatment, and simply having this pain under the age of 45.
WT: For PsA, evidence suggests that the delays are at multiple levels. Firstly, individuals need to understand that psoriasis can develop into PsA. Then there's primary care. GPs need to be supported in making a diagnosis early, which is really hard because there's no perfect test for PsA and blood tests are often negative. These are the big bottlenecks.
Are there ongoing initiatives that are showing promise?
MM: In the UK, for example, the National Axial Spondyloarthritis society is campaigning for local inflammatory back pain pathways to support a swift referral from primary care direct to rheumatology, and they have met with the UK Parliament in this regard. ASIF’s Delay to Diagnosis project aims to do the same globally.
WT: There are large studies tracking people living with psoriasis to better understand the process by which a fifth of them will go on to develop PsA. If we can understand that process, there are lots of advantages in terms
of identifying people earlier, potentially even implementing
Who do you think can make the most difference in the next 5 to 10 years in pushing change in this area? Policymakers, physicians or patients?
WT: We've all got to work together. The onus is on us as clinicians and academics to provide the evidence that enhanced surveillance and early screening produces better outcomes. We will need to then work with policymakers to improve the treatment paradigm. Policymakers should recognise the impact of delayed diagnosis, particularly on people’s ability to work. And there's no one who's going to be a better advocate than our patient partners.
MM: When it comes to patients and doctors, I'm a great believer in shared decision-making, but it requires an educated, well-informed patient. A family doctor may not see many cases of axSpA, maybe only half a dozen, so patients need to educate them, and patient organizations have a huge responsibility to educate their members.
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