P76 The experiences of and preferences for delivery of outpatient rheumatology services in adults diagnosed with axSpA living in the UK: a qualitative study

Abstract

Background: Rising healthcare demand for people with rheumatic and musculoskeletal diseases in the UK is set to continue. Delivering sustainable outpatient rheumatology services, with a shift towards remote patient monitoring, virtual consultations, shared decisionmaking and supported self-management, is now a key NHS priority. Involving patients in outpatient rheumatology services transformation is considered a core prerequisite for success; a first step being to understand the perspectives of and preferences for care of patients with rheumatic and musculoskeletal diseases. Current evidence of perceived health service needs in people with inflammatory arthritis centres on rheumatoid arthritis; understanding about perceptions of people with axial spondyloarthritis (axSpA), in particular younger adults, is limited. The aim of this qualitative study was to explore in depth the experiences of, and preferences for, the delivery of NHS outpatient rheumatology services in adults diagnosed with AxSpA. Method(s): Five semi-structured focus groups were conducted between 2018 and 2019 with younger (age <45 years) and older (age >=45 years) adults diagnosed with AxSpA living in the UK. Participants were recruited from the National Ankylosing Spondylitis Society (one group) and hospital outpatient rheumatology clinics in two NHS Trusts in England (four groups). Focus groups were audiorecorded, transcribed verbatim, anonymised and uploaded to NVivo 12. Data were analysed thematically and validated by including deviant accounts and single counting. Initial codes were generated, and subsequent themes developed through iterative discussions among the researchers. Result(s): Thirty-three adults with AxSpA (18 men and 15 women) from diverse ethnic backgrounds and with a range of disease-related characteristics participated in the study. Thirteen participants were aged <45 years (M=33, SD=5.88) and twenty were aged >=45 years (M=59.6, SD=9.79). Four key themes were developed from the data: (i) early access to specialist rheumatology services staffed by health professionals with up-to-date knowledge and expertise in AxSpA. ii) preferences for need-based flexibly delivered patient-centred consultations with shared decision-making (specifically in younger adults) and continuity of care that is integrated across providers. iii) opportunities to discuss different treatment options with clinicians (younger adults) and information about rapid access at time of flare (younger and older adults). iv) self-management, including the value of peer support and reliable sources of evidence-based information about AxSpA. Conclusion(s): Focus group members described a picture of inconsistent delivery of NHS rheumatology outpatient services in the UK. Preferences for care in adults with AxSpA largely align with proposals to transform NHS outpatient services and revolve around flexible delivery of patient-centred consultations, underpinned by shared decision-making and supported self-management. However, integrating these preferences into new models of care delivery to ensure optimal patient outcomes will require transformative action. These data can inform local and national developments to reconfigure outpatient services for people with AxSpA.