RAISE

Self-management in the rare autoimmune rheumatic diseases: using a Person Based Approach to develop a combined intervention (RAISE: Rare AutoImmune SElf-management programme)

Chief Investigator	Institution	Dates	Funding Stream	Amount
Dr Jo Robson	University of the West of England, Bristol	01/10/2021 to 30/08/2022	Research Capability Funding spring 2021	£23,304.50

Summary

Systemic lupus erythematosus, systemic vasculitis, inflammatory myositis, scleroderma and Sjogrens Syndrome are rare autoimmune rheumatic diseases (RAIRDs). A survey of 2000 patients by the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), found 61% were struggling, 45% had reduced/stopped work and 45% had impact on family life. Our 2020 survey of NHS departments found 80% have no accessible self- management support.

Patients can feel isolated: care is spread across specialists, and general physicians, family and friends may not have experience of these diseases. Patients are excluded from rheumatology self-management interventions because they are considered too complex a population. 

The British Society of Rheumatology and RAIRDA propose RAIRDs should be considered collectively to improve outcomes and care. The NHS 5 year forward plan highlights self-management is essential for people with chronic diseases. Key issues of importance for people with RAIRDs: adapting to organ/life threatening chronic disease and immunosuppressant treatment, navigating the system and impact on health-related quality of life. 

We plan to use a Person-Based Approach (PBA) to develop a self-management intervention for people with RAIRDs. PBA is a method for planning, optimising, evaluating and putting into practice health interventions to ensure that they are meaningful, engaging and feasible for all users. 

STAGE ONE (RCF funding):

Intervention Planning: scoping review of self-management interventions and outcomes in individual RAIRDs, qualitative focus groups, formulation of guiding principles, and identification of appropriate Behaviour Change Techniques (BCT) for each self-management category. Team building and patient/clinician advisory panels. 

STAGE TWO (NIHR Programme Development Grant):

Systematic literature review of self-management interventions and outcomes in individual RAIRDs. Intervention optimisation (focus group refinement) and develop novel patient reported outcome measure (PROM) for RAIRDs. 

STAGE THREE (Programme Grant):

Mixed methods process evaluation of final complex intervention, validation of PROM.