Improving the Diagnosis and Early referral of patients with AxiaL spondyloarthiritis (IDEAL)

Background Axial spondyloarthritis (axSpA) is a common inflammatory rheumatic condition, frequently starting in early adulthood, with 1 in 200 (270,000) people in the UK living with this painful and progressive condition. However, axSpA is characterised by chronic back pain (CBP), which is frequently due to other causes and responsible for 7 million GP consultations each year, with 700,000 having pain persisting over 3 months. This contributes to difficulties in diagnosing axSpA, with an average time from symptom onset to diagnosis of 5-8 years. This diagnostic delay leaves people in pain and puts them at risk of developing irreversible damage, with long-term impacts on life, relationships, and work. AxSpA can be effectively treated, but only once the right diagnosis is made. Because most CBP is due to non-inflammatory causes, identifying people likely to have axSpA is challenging, especially in non-specialist settings, such as primary care. There is need to optimise early identification and referral of all people with potential signs and symptoms of axSpA to reduce unnecessary delay, resulting in earlier management and effective treatment. Our aim is to develop and implement an effective acceptable electronic axSpA referral strategy from community to specialist care. Methods This programme of research consists of four work packages (WP), supported by patients and a Community of Practice (CoP). WP1 will combine existing data from three UK axSpA cohorts, which contain similar detailed data on diagnostic delay and individual s clinical variables, to provide a clearer understanding of the UK characteristics associated with delays in axSpA diagnosis. This will ensure that all key variables are included in the WP2 dataset, with potential to be part of the final modelled referral strategy. WP2 will model data from 720 younger adults consulting their GP with back pain, subsequently investigating them for axSpA. We will compare the best' existing referral strategy to a new referral strategy, iteratively modelled with patient and public involvement (PPI) and CoP groups, based on strategy effectiveness, cost effectiveness and ease of implementation. The superior performing strategy will be developed into a primary care record pop up reminder appearing when relevant patients are seen. WP3 will then test whether the superior referral strategy pop up helps diagnose axSpA more promptly than usual care , through a parallel cluster randomised controlled trial in general practice, with concurrent qualitative examination of the referral strategy. WP4 will form a process evaluation of this programme of work, running concurrently with the other WPs. Impact and dissemination Development of an effective referral strategy for use in primary care would have a considerable impact on reducing the current substantial delay in patients receiving a diagnosis of axSpA. A reduction in the time to axSpA diagnosis would improve health and socioeconomic outcomes. Findings will be disseminated to patient, primary care and rheumatology organisations, NHS stake holders and key decision makers, to ensure (if effective) this intervention is implemented. Methods to achieve this will be determined in collaboration with our PPI group and CoP, facilitated through our link with Keele University s Impact Accelerator Unit (IAU).