Act on Axial SpA campaign- A Gold Standard Time to Diagnosis

Good Morning!

I hope everyone is having a good week so far 😊

Today’s blog is to share with you information about a new exciting national campaign which was officially launched by the National Axial Spondyloarthritis Society (NASS) in June 2021- Act on Axial SpA: A Gold Standard Time to Diagnosis (www.actonaxialspa.com; https://nass.co.uk/).

Many of you will be all too familiar with the unacceptable lengthy time to diagnosis of axial spondyloarthritis (axial SpA, which includes ankylosing spondylitis) – currently an average of 8.5 years from symptom onset to diagnosis in the UK. The Act on Axial SpA campaign is aimed at reducing time to diagnosis of axial SpA to a more acceptable length of one year. To ensure that people receive appropriate treatment and care earlier on in their condition, to ultimately improve clinical outcomes.

This campaign is essential for the wellbeing of many people who have been, or are currently, suffering with chronic back pain and awaiting a diagnosis. As the start of symptoms is often in the 20s-30s, the effects of the condition can be debilitating for those wanting to start their careers, relationships, etc during this period of their life. Many people who visit their GP with back pain may feel they are not being listened to or believed about their symptoms, and many others feel helpless and withdraw from care completely. The delay to axial SpA diagnosis, which will be longer for those that withdraw from care, may cause irreversible damage to the spine.

Would you like to share your experiences of diagnostic delay with the Project Nightingale community? If so, we would love to hear your story - please get in touch via ns2271@bath.ac.uk

Why is there such a long delay to diagnosis in axial SpA?

Although the past few decades have seen a huge increase in our understanding of the condition, including improvements in available treatments and improvements in diagnosis, the diagnosis of axial SpA remains complex, and the terminology can be confusing. For example, up until recently, the condition was known only as ankylosing spondylitis (https://www.projectnightingale.org/blogs/axial-spondyloarthritis-what-is-axspa-and-how-does-it-relate-to-ankylosing-spondylitis/)! And in terms of public awareness, even just the name axial spondyloarthritis can be hard to pronounce!

One of the key aspects of early diagnosis is education and awareness of both healthcare professionals such as GPs and physiotherapists, and the general public. Below are some findings from research into the diagnostic delay in axial SpA:

There is a low level of specialist knowledge of axial SpA in primary care (that includes GPs)

Approximately 40% of people with axial SpA say they have received treatment from osteopaths or chiropractors before their diagnosis, many of whom may not have specialist knowledge on axial SpA

A recent survey of chiropractors and osteopaths found that the main perceived barrier to onward referral (to a rheumatologist) by a GP was that they did not want to accept their professional opinion!

Patients may find difficulty expressing their symptoms, and say that they have experienced negativity or reluctance from GPs to investigate further

There is a lot of outdated information available to GPs, such as the Oxford Handbook of General Practice, which still refers to late stages of axial SpA, with a focus on males and late disease features. In addition, there is said to be a strong genetic association with the human leukocyte antigen B27 (HLA-B27) gene, but up to 25% of axial SpA patients are HLA-B27 negative. Women are more likely to be HLA-B27 negative, and represent a huge 50-70% of individuals with non-radiographic axial SpA (nr-axial SpA), but sadly many GPs still believe that the disease occurs mostly in males.

The diagnosis of axial SpA is complex, and it involves more than an assessment of individual symptoms or tests. As well as GPs, rheumatologists also may not have the specialist knowledge of axial SpA or may not feel confident interpreting the various tests which are carried out, including MRI scans (for nr-axial SpA) which require being interpreted by a radiographer. Reassuringly, there have been new recommendations published which aim to support the training of rheumatologists/ radiologists in interpretating MRI scans where someone may have suspected axial SpA. This should help achieve a reliable diagnosis.

How was the campaign started?

The idea for the Act on Axial SpA campaign was initially conceived by NASS CEO Dr Dale Webb, and consultant rheumatologist Dr Raj Sengupta (principal investigator of Project Nightingale!), and Professor Karl Gaffney.

The campaign plan has involved an 11-month consultation process which included people living with axial SpA, healthcare professionals, professional bodies, commissioners, Parliamentarians and policymakers, as well as sending out a survey to them to get an idea of the kind of support there would be for this campaign. Workshops were also held with public health specialists, journalists, documentary makers and other communications experts to understand more about public awareness campaigning, and with stakeholders to get their input on the recommendations made.

The campaign has been able to identify an integrated whole-system approach that uses multiple change levers, and allows the condition to be viewed in a way that involves all contributing factors, rather than just the disease itself.

To put it another way, the intervention is both system-focussed (e.g. using pathways to follow for referral to simplify and standardise care) and people-focussed (e.g. using an online symptom checker for those with potential axial SpA).

What does the campaign hope to achieve?

Four primary changes were identified that the campaign sets out to achieve. These are described below with the proposed actions for each ‘change’:

1. Help the person with inflammatory back pain to recognise that it might be axial SpA and feel confident about the actions they should take

Phase 1- communications to drive public awareness to test the act on axial SpA brand and key messaging

Phase 2- concentrated local campaign in a single area, combining learning from Phase One and adding new communication tactics. This may be extended to other parts of the UK if it results in an increase in rheumatology referrals

Use of ‘SPINE’ which sets out the key symptoms:
Symptoms start slowly
Pain in the lower back
Improves with movement
Night time waking
Early onset (under 40)

An eight-point set of inflammatory back pain (IBP) criteria and online symptom checker, with information on booking an appointment with a primary care consultation (see actonaxialspa.com)

2. Ensure that patients who present at primary care and community physiotherapy services with potential axial SpA are appropriately identified and urgently referred to rheumatology

Create and support a group of clinical champions including First Contact Practitioners, GPs, community musculoskeletal physiotherapists, and nurse practitioners. Their work will directly result in earlier identification of patients with suspected axial SpA and quicker referral to rheumatology

Promote use of online resource (actonaxialspa.com), eight-point IBP criteria, and SPADE tool which is designed to assist medical professionals define the chances of axial SpA in a patient with chronic back pain, below the age of 40 (www.spadetool.co.uk)

Pilot project in Bath where if a GP types “back pain”, the electronic patient record system can prompt consideration of axial SpA

3. Ensure that patients who present at secondary care services with suspected axial SpA are identified at the first presentation and urgently referred to rheumatology

Currently, if secondary care clinicians do suspect axial SpA (e.g. through ophthalmology, gastroenterology, dermatology and orthopaedic spinal surgery), they may reroute the patient back to the GP or follow a standard 18-week secondary referral route, all of which adds to delay

A national training programme for secondary care services will be rolled out locally led by rheumatologists and their teams, and later refined and rolled out nationally

A combination of online access to learning and face-to-face teaching sessions on site at the hospital base

A targeted media and professional communications programme including presentations, exhibitions and poster case studies at events

Use of hospital’s internal referral pathways to rheumatology, which will be audited

4. Ensure quick and accurate diagnosis of axial SpA in rheumatology

There is a lack of general awareness of the term axial SpA among UK radiologists: survey responses of 269 UK radiologists found that just 75% were aware of the term axial SpA, and only 31% were aware of the definitions of ‘positive’ MRI (suggestive of Axial SpA) for the sacroiliac joints and 25% for the spine

Recommendations for the interpretation of MRI in the diagnosis of axial SpA have been recently developed by BRITSpA. Their national implementation should help standardise practice and allow for a more consistent, reliable approach to diagnosis

An axial SpA MRI training programme will be developed which will also promote guidance to reach undergraduate medical students, foundation and specialty healthcare professionals

Summary and sign-off

I really hope you found this update on the Act on Axial SpA campaign interesting. I’m sure you’ll agree it is a fantastic effort to get these changes recognised and in practice. This campaign is a result of years of continuous effort to raise public awareness and education in Axial SpA, and the outcome is a tremendous set of changes which will eventually help all those with potential Axial SpA receive a much faster diagnosis. These changes cover so much of NHS care people receive day-to-day, and hopefully, as a result, in the future people can receive an early diagnosis and carry on with their lives!

I’d like to acknowledge our own Project Nightingale team members Rosie Barnett, who is research advisor on this programme, and Dr Raj Sengupta who is one of the campaign founders and medical advisors on the programme.

You can access more information on the campaign website here: https://www.actonaxialspa.com/for-the-general-public/

If you would like to share your thoughts and opinions after reading this blog and/or the full article, please contact me on ns2271@bath.ac.uk

Best Wishes,

The Project Nightingale Team