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: