Axial SpA – How long are patients waiting for a diagnosis? Read our first report from the NASS time to diagnosis audit.

Axial SpA – How long are patients waiting for a diagnosis? Read our first report from the NASS time to diagnosis audit.

NASS, in collaboration with rheumatology teams from our Aspiring to Excellence programme have developed a patient survey tool to measure and monitor how long patients wait for a diagnosis of axial SpA, from symptom onset in the UK.

Today the audit received an award by BRITSpA for showcasing excellence in service delivery and improvement at the 2023 BRITSpA annual scientific meeting.

The average UK time to diagnosis for axial SpA is 8.5 years. It has not improved over time and is longer than the international mean of 6.7 years. There are significant benefits to timely diagnosis, not least a reduction in pain and distress for those experiencing symptoms. In addition:

  • Diagnostic delay costs the UK economy £18.7 billion p.a. Reducing time to diagnosis to one year would save an average patient £167,000.
  • Reducing delay improves functional impairment and quality of life.
  • Reducing delay alleviates pressures in primary care and secondary care if patients are identified on first presentation and referred to rheumatology.

In 2019, NASS created a quality improvement programme called Aspiring to Excellence. Designed to encourage and recognise service improvement in axial SpA care, it provides tailored, expert support provided by our partner, the NHS Transformation Unit, and is delivered through a multi-site learning environment, team coaching and webinars.

To measure the programme’s performance, a group of participating clinicians worked with us in the summer of 2022 to create a new audit tool. Our aim was to measure at each site: time from symptom onset to presentation in primary care; time from first presentation to referral; time from referral to first appointment in rheumatology; and time from first appointment in rheumatology to diagnosis.

This report presents the initial results of the first four-nation UK audit of time to diagnosis in axial SpA. We don’t yet have a comprehensive picture across the UK, and the numbers of patients per department are small overall. Thus, we cannot with confidence refer to the results in the report as providing a baseline position. Nevertheless, this is already the largest current data set in the UK on diagnostic delay.

The key facts from the survey based on 325 patients who submitted data and had been diagnosed since 2021 are:

NASS CEO Dr Dale Webb introduces the report launch by summarising:

“The results of this first audit should galvanise efforts to drive reduction in diagnostic delay and create debate on what we should aspire to, so that nobody has to live for long periods with debilitating and painful symptoms and no agreed diagnosis and treatment plan.”

Dr Marian Chan, Consultant Rheumatologist and Clinical lead axial SpA services at Bedfordshire Hospitals NHS Foundation Trust remarked on here teams involvement in the audit as:

“This new audit tool – enabling patients to share their diagnostic journey and key steps in that journey – has revalidated our understanding that the majority of our delay is within primary care. The audit tool has not only furthered our understanding of where our unmet needs are but will allow us to continue measuring the impact of change, tracking this more quickly and efficiently, locally, and nationally.”

Will Gregory, Consultant Physiotherapist and Clinical Governance Lead, Rheumatology, Salford Royal Hospital and Vice President of the British Society for Rheumatology speaks of the power of the audit tool in practice:

“The team at NASS, the Aspiring to Excellence teams and all rheumatology services contributing to this audit must be congratulated on the creation, at speed, of a nimble audit tool that is proving an effective way to explore where the delays in diagnosis of axial SpA lie across the UK and through multiple health care providers. Having data to support the broader musculoskeletal workforce answer the question of “but what can I do?” is vital as we seek to decrease delay to diagnosis and hence improve quality of life for those living with axial SpA.

Also, as the BSR NEIA audit moves into its sixth year and expands to collect data from more rheumatology presentations it is useful that NASS offer a condition-specific audit to help guide potential national changes that could facilitate the identification and treatment of rheumatology conditions more rapidly”

View and read the full report: What is the average time to diagnosis for axial spondyloarthritis in the UK?

NASS wants to take this opportunity to thank all the 19 Aspiring to Excellence teams who have taken part in the audit to date, the additional rheumatology teams signed up, the programme sponsors and of course the patients who took the time to complete the survey.

This survey and audit tool is funded by the Aspiring to Excellence programme which is led by NASS in partnership with BRITSpA and the NHS Transformation Unit and sponsored by Abbvie, Biogen, Lilly, Novartis and UCB.

Symptoms starting slowly

Pain in the lower back

Improves with movement

Night time waking

Early onset (under 40)