Key publications: spotlight on the author
In this blog series, we dive deeper into some of the key research publications on delay to diagnosis in axial spondyloarthritis (axial SpA). The authors provide their unique perspective on the rationale and clinical implications of their work.
Introducing our Spotlight Series
For our first spotlight, we hear from Dr Dale Webb, Professor Karl Gaffney, and Dr Raj Sengupta about their upcoming Rheumatology Editorial: Delayed diagnosis in axial spondyloarthritis—how can we do better? We also hear from Dr Sizheng Steven Zhao, who discusses his recently published systematic review on worldwide delay to diagnosis in axial SpA.
Delayed diagnosis in axial spondyloarthritis—how can we do better?
On the 22nd of June, the axial SpA public, professional and policy communities witnessed the exciting launch of our groundbreaking Act on Axial SpA campaign – proposing a roadmap of implementable solutions to reach a Gold Standard time to diagnosis of one year from symptom onset.
Hot on the heels of this launch, we are proud to announce the publication of our Rheumatology Editorial piece: Delayed diagnosis in axial spondyloarthritis—how can we do better? https://doi.org/10.1093/rheumatology/keab496).
Written by the Gold Standard campaign founders, Professor Karl Gaffney, Dr Dale Webb and Dr Raj Sengupta, this impactful piece provides a narrative to support our signature Act on Axial SpA: A Gold Standard Time to Diagnosis report. The authors provide an overview of the main barriers to timely diagnosis in axial SpA, and introduce potential solutions to address these.
Below, we present quotes from the authors speeches at the Act on Axial SpA campaign launch, to understand their unique perspectives on the birth of this groundbreaking programme.
Dr Dale Webb, NASS CEO
“The context for us meeting here tonight is simple: delay to diagnosis has significant and adverse consequences clinically, socially, economically. Axial SpA first affects people in their formative years: robbing them of opportunities to socialise, form relationships, start careers. Delay to diagnosis has not improved significantly and if we don’t act, if we don’t act boldly, then we are in danger of normalising this situation. So, we have to change the narrative. We have to offer a roadmap out of this situation, that understands the journey to diagnosis from a person from the moment their symptoms start, to the moment they are diagnosed in rheumatology. And we have to use a range of levers: change levers, policy levers, clinical, commissioning and behavioural levers that together, in an integrated way, will result in timely diagnosis. This report which we are launching today sets out our roadmap to achieve a Gold Standard time to diagnosis of one year… We will launch a campaign that will seek to invite every NHS organisation and every professional body involved in axial SpA to commit to the recommendations in this report and to support the implementation of the Act on Axial SpA campaign.”
Professor Karl Gaffney, Chair of the NASS Medical Advisory Board, Consultant Rheumatologist, Research and Axial Spondyloarthritis Service Lead at the NNUH, Norwich
“This is truly a momentous occasion for the axial SpA community. And by that I don’t mean just people living with axial SpA, or healthcare professionals who are striving to improve the quality of life for patients with axial SpA, but more importantly, all of those patients who have axial SpA but don’t know it – who have been hampered on their journey to diagnosis. This is really an ambitious project, but we have the knowledge, we have the resources, and we have the ambition, and we can do it. But we need your support.”
Dr Raj Sengupta, Consultant Rheumatologist and Clinical Lead for Axial Spondyloarthritis at the RNHRD, RUH, Bath
“www.actonaxialspa.com is our new online resource dedicated to improving the diagnosis of axial SpA. In addition to its public facing content, the site offers a dedicated section for HCPs – a focal point for collaboration, knowledge and best practice sharing. A diagnosis excellence Hub…
We need to do this as a community: GPs, physiotherapists, pharmacists, occupational therapists, chiropractors, osteopaths, etc., we all meet people who have undiagnosed axial SpA. We all need to be thinking about that person who has had 7 years of back pain and could it be axSpA and keep the communication going. And every one of these people needs to contribute to the website – looking at the website, giving feedback about what’s working well, what’s not working so well. Developing content for the website… So, it’s raising awareness with this fantastic website resource that needs to become the central point of information, a repository of information, to help reduce the delay in diagnosis. Now let’s go and do this together.”
Diagnostic delay in axial spondyloarthritis: a systematic review and meta-analysis
Also heavily referenced within the Editorial is a recent systematic review and meta-analysis conducted by our NASS & BRITSpA collaborator Dr Sizheng Steven Zhao, investigating diagnostic delay in axial SpA and its impact. We spoke with Dr Zhao about his unique perspective and rationale for his review.
Dr Sizheng Steven Zhao
Clinical Lecturer in Rheumatology, University of Manchester
@stezhao – twitter
One thing that gives me great satisfaction and pride is working in the early arthritis clinic. People suddenly incapacitated with pain and impairment from inflammatory (e.g., rheumatoid) arthritis get reviewed, diagnosed, and treated within a few months, sometimes weeks.
The satisfaction of helping people get their lives back promptly and their future saved from irreversible damage is, for me, one key reason for my career choice in rheumatology.
In stark and sad contrast, people with inflammatory back pain often wait years, sometimes decades, to get the same. Axial SpA typically affects younger adults, with disabling symptoms disrupting pivotal periods of life – time in education, starting careers, establishing identity and relationships.
Many people look back at their journey leading up to a diagnosis and report having felt confused, dismissed, frustrated.
As clinicians and researchers, a group of colleagues and I want to better understand the factors that contribute to delays to diagnosis. Things need to improve.
We looked to existing published research for answers. In summary, long delays to diagnosis were common across the world, with an average of 7 years. Studies from the UK reported particularly long delays with an average of 8.7 years, compared to 5.9 years in studies from Turkey or 4.3 years from China for example.
Psoriatic arthritis, another member of the SpA family, more often involving hands and feet, has a much shorter delay to diagnosis (average 2.6 years). This highlights the challenges of diagnosing axial SpA – swollen hands and feet are easier to see than inflammation in the spine!
Factors linked to longer delays differed widely across the world. Delays were longer in people from lower socioeconomic backgrounds and having lower educational attainments. This highlights the importance of societal level investment to reduce inequalities, but also targeted education to improve awareness of inflammatory back pain among the public and healthcare professionals.
Our review also found that people who started experiencing symptoms at a younger age tended to have longer delays. Back pain often resolves in young people, but it is important to help individuals and healthcare providers to distinguish persistent inflammatory (suggestive of axial SpA) from other types of back pain.
Efforts to improve awareness and education among the public and healthcare professionals are core to NASS’s campaign to reduce delay to diagnosis. I am excited for a future where patient journeys voiced in axial SpA clinics resemble the satisfaction in the early arthritis clinics next door.
Keep visiting our Spotlight Series
Keep visiting our Spotlight series as we explore the latest published research and opinions on delay to diagnosis and how to improve it. Posts will be organised according to the 4 main sources of diagnostic delay that we are tackling in our Act on Axial SpA Campaign and which are detailed in our signature document Act on Axial SpA: A Gold Standard Time to Diagnosis.
Delay 1) Lack of public awareness
Delay 2) Delayed referral from primary care
Delay 3) Delayed referral from secondary care non-rheumatology specialties
Delay 4) Delayed diagnosis in rheumatology.
We will build around spotlight publications with additional, targeted content: for example, videos from the authors, best practice examples of diagnosis, and even interactive content such as quizzes. Our aim is to provide a clinical/medical portfolio of communications stimulated by these core publications, which offers the latest information and experience-led best practice examples on diagnostics in axial SpA.
If you are an author/co-investigator on a publication or study linked to diagnosis of axial SpA that you think would be of interest for the series, please do get in touch with our team at: goldstandard@nass.co.uk.
To learn more about our Act on Axial SpA campaign, you can visit the following web page: https://www.actonaxialspa.com/healthcare-professional-gold-standard-overview/.
At the absolute core of this campaign, is healthcare professional collaboration: collaboration between specialists, collaboration between primary and secondary care, and collaboration with patients. If you would like to learn more about how your specialty or hospital can help reduce delay to diagnosis in axial SpA, visit our act on axial SpA healthcare professional homepage. Here, you can find targeted content and recommendations for the referral and diagnosis of axial SpA, developed through collaborations with experts in primary and secondary care. You can contact our Gold Standard team if you wish to know more or want to work with us: goldstandard@nass.co.uk.
We are all excited for a future where axial SpA is diagnosed early.
Join our campaign: to Act on Axial SpA.
Want to find out more?
Read our first Act on axial SpA impact report
Interested in our work to drive down diagnostic delay. Then click the button below and download a copy of our first impact report.
The report details the key results from the programme in its first 16 months, detailing how NASS has built a burning platform for driving down the diagnosis time of axial SpA, influenced politicians and key decision makers and increased awareness of the condition among the general public and health care professionals.
Symptoms starting slowly
Pain in the lower back
Improves with movement
Night time waking
Early onset (under 40)
