Exploring perceptions of service delivery in axial spondyloarthritis
Research type
Research Study
Full title
Exploring models of care and patient preferences for the delivery of services for people with Axial Spondyloarthritis
IRAS ID
241773
Contact name
Nicky Wilson
Contact email
Sponsor organisation
King' College London
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
This research will explore the experiences of people with Axial Spondyloarthritis (Ax SpA) under the care of rheumatology services in two NHS Trusts in England, about access to intervention and forms of support for the management of their disease. Ax SpA is a long-term inflammatory disorder predominantly affecting the spine. It commonly starts in the 3rd decade of life and is accompanied by a significant disease burden. Consequently, ongoing management and access to healthcare professionals for intervention and support across the lifespan, is recommended.
Little is known about patient experiences of, and preferences for, the delivery of care. Surveys of people with AxSpA in the UK have identified widespread variability in provision of and access to care. A recent roundtable discussion among patient advocacy groups across Europe, highlighted a desire for specialist services offering holistic personalised information and care.
In this study we will conduct four focus groups (each with between 6 and 8 participants and lasting up to 60 minutes) in two linked NHS Trusts in England, to explore in-depth patient’s experiences of contextualised care. Adults ≥ 16 years with a diagnosis of Ax SpA and under the care of the rheumatology service at either Trust will be eligible to participate. The foci for group discussions will include perceptions about personalised care under the current model of service delivery, the impact of current service delivery on patient burden of disease, preferences for delivery of care and support for people with Ax SpA across the life span, and different approaches to delivering such services. Two groups will be specifically for participants aged between 16 and 44 years.
The data gathered will be transcribed and anonymised, and analysed using a qualitative thematic approach. The findings will provide the foundations for a future experience-based approach to service co-design between professionals and patients.REC name
London - Queen Square Research Ethics Committee
REC reference
18/LO/1037
Date of REC Opinion
28 Jun 2018
REC opinion
Further Information Favourable Opinion