People living with Axial Spondyloarthritis (axial SpA), an inflammatory condition that affects the spine and joints and can cause extreme pain and fatigue, are facing delays of several years with possible missed opportunities for sooner review before receiving a diagnosis.
A research survey co-led by Salford Royal Consultant Physiotherapist Will Gregory and colleagues at the Royal Free Hospital in London, has shown that delays are reduced where there is a specialist Axial SpA service like Salford’s. The UK national average delay is 8.7 years while in Salford patients wait just under six years on average.
The survey of more than 100 patients, diagnosed from the mid-1980s to current day, also showed nearly a quarter of participants reported seeing a GP between five and 10 times with musculoskeletal issues before being diagnosed with axial SpA, while 14 per cent saw a GP more than 10 times.
Salford Royal’s rheumatology team see around 300 people a year with the condition and are able to offer a range of treatments, including medication and physiotherapy to significantly lessen symptoms.
A multi-disciplinary Salford team won a place on the prestigious quality improvement programme Aspiring to Excellence*, which aims to improve treatment and care for patients with axial SpA, in 2021. The colleagues involved are Will Gregory, Consultant Rheumatologists Dr Audrey Low and Dr Meghna Jani, Consultant Physiotherapist Paul Barratt and Highly Specialist Rheumatology Physiotherapist Katy Porthouse.
Aspiring to Excellence: Paul Barratt, Katy Porthouse, Will Gregory, Meghna Jani
Mr Gregory (pictured top) said: “Delayed diagnosis is an ongoing challenge and while our communities with specialist centres had lower delays than the UK average, they are a long way from the National Axial Spondyloarthritis Society (NASS) ‘Gold Standard’ of one year time to diagnosis. It’s an important issue because of the pain and disability associated with axial SpA, which can be helped by modern evidence-based treatments and exercise programmes. Achieving the Gold Standard will enable more patients to access appropriate treatment earlier and improve their health and well-being.
“Our experience is that a lack of awareness and recognition of axial SpA among both healthcare professionals and the wider community contribute to these delays. Chronic back pain is a common symptom but other signs can be subtle and varied.
“We would like to see ongoing education and awareness events to promote the identification of inflammatory back pain signs and symptoms for both the public and for community-based musculoskeletal healthcare professionals.”
The research A survey of diagnostic delay in axial spondyloarthritis across two National Health Service (NHS) rheumatology services has been published in the journal Cureus.
*Aspiring to Excellence is a strategic partnership between the National Axial Spondyloarthritis Society (NASS) and BRIT SpA in partnership with the NHS Transformation Unit and sponsoring companies AbbVie, Biogen, Eli Lilly, Novartis and UCB.