Barriers and Facilitators in Diagnosing Axial Spondyloarthritis v1.0
Research type
Research Study
Full title
Exploring patients’ and clinicians’ perspectives and experiences regarding barriers and facilitators in diagnosing Axial Spondyloarthritis: A qualitative study
IRAS ID
262371
Contact name
James Prior
Contact email
Sponsor organisation
Keele University
Duration of Study in the UK
1 years, 4 months, 31 days
Research summary
Axial spondyloarthritis (axSpA) is an inflammatory disorder which can cause back pain, tendon and ligament swelling, fatigue, inflammation of the eye, bony growths and spinal fusion. Despite the severity of axSpA, there is still often a significant delay between onset of symptoms and diagnosis, with delays of between 8 and 12 years being commonly reported. Diagnostic and treatment delay for axSpA can lead to worsened disease activity which in turn can cause significant physical disability, mental health problems and financial burden. Diagnostic delay in axSpA has been reported to be associated with mis-diagnosis or difficulty diagnosing due to additional arthritis diagnoses, female gender, greater age at diagnosis, less inflammation and pain in the limbs and digits, and lower levels of education, among other factors.
We will utilise focus groups and interviews of both patients and practitioners respectively to gain insight into the process of diagnosis for axSpA and causes for delay. Focus groups will explore patient views on the perceived barriers and facilitators to diagnosis, with focus on their own personal experience and perception of their diagnostic journey. Individual interviews with healthcare professionals (HCPs) will also be undertaken, focusing on referrals and perceived key factors influencing diagnostic delay . Data-gathering will continue until themes identified in interviews and focus groups become repetitive (data saturation).
Patients will be identified either from those treated with axSpA at the Haywood Community Hospital, Stoke-on-Trent (specialist service provider for Rheumatology and partner with our Centre) the National Axial Spondyloarthritis Society (NASS) charity or participants informed via social media. GPs will be recruited from within a network of local practices in partnership with our Centre or GP researchers from within the Centre. Rheumatologists will be recruited from the Haywood Community Hospital and allied health professionals (AHPs), e.g. physiotherapists, will be recruited through a network of local clinics and practitioners.
REC name
London - Brent Research Ethics Committee
REC reference
20/LO/0592
Date of REC Opinion
14 May 2020
REC opinion
Favourable Opinion