P192 What do patients value and need in the diagnosis, treatment and care of axial spondyloarthritis? Results from a quantitative study
Authors: Hamilton Jill , Drury Alison , Hardy Alison , Brady Lucy , Lopata Rachel , Dickinson Sally , Clark Zoe , Marshall Liz , Eddison Joe , Webb Dale 
Published: April 2023

Background/Aims

Services for axial spondyloarthritis (axial SpA) are informed in the UK by NICE Guideline 65 (2017) and Quality Standard 170 (2018), and internationally by the European Alliance of Associations for Rheumatology (EULAR) Recommendations (2022) and the Assessment of Spondyloarthritis Society (ASAS) Quality Standards (2020). Whilst there was some patient input into the development of these documents, they express a predominantly clinician-based view of what should be provided in diagnosing and managing axial SpA. Research was undertaken to determine the values and needs of patients in the diagnosis, treatment and care of axial SpA. These will be used to inform the development of a set of patient values-based quality standards to sit alongside those developed by NICE, EULAR and ASAS. They should influence any further updates of these standards to ensure that they are patient-centred going forward.

Methods

The research was conducted between September 2021 and April 2022. The objectives of the research were shaped by NASS’s desire to provide patient-centred definitions of quality care, to complement existing clinical definitions. The research comprised a literature review, a small-scale qualitative study (n = 12) and a larger-scale quantitative survey (n = 939). The literature review and qualitative study informed the quantitative study, ensuring that the questions asked reflected what matters most to people with axial SpA.

Results

Qualitative stage found that people wanted: to be believed; to experience a purposeful, consistent pathway of care; to know what they could do to help themselves. Quantitative data found: 40% of people find their ability to carry out everyday tasks is affected on a daily basis; 80% of respondents agreed or strongly agreed with the statement ‘I wish health professionals had joined up the dots of my different symptoms sooner’; 53% agreed or strongly agreed with the statement ‘I didn’t feel believed by health professionals when I was trying to get my diagnosis’; 18% of people received their diagnosis privately; 17% of people received no information within the first year of diagnosis; 39% of people were satisfied overall with the care they received; 24% of people did not think they were self-managing their condition well; 62% agreed with the statement ‘I would like to work as a team with my health professionals and make decisions about the care and day to day management of my axial SpA together’.

Conclusion

We recognise that there are areas of good practice and acknowledge that the NHS is under considerable strain. However, the overall message from the study is that people with axial SpA do not think that they are receiving high quality care. It is also clear that people with axial SpA know what they do want.

Disclosure

J. Hamilton: None. A. Drury: None. A. Hardy: None. L. Brady: None. R. Lopata: None. S. Dickinson: None. Z. Clark: None. L. Marshall: None. J. Eddison: None. D. Webb: None.