Rare AutoImmune SElf-management programme development (RAISE)

Research question What should the content and structure of a self-management and psychological support intervention for people with rare autoimmune rheumatic diseases in the UK include?

Background The rare autoimmune rheumatic diseases include systemic lupus erythematosus, vasculitis, scleroderma, myositis and Sjogren s syndrome. These multi-system diseases can be fatal and present at any age. They impact health-related quality of life, including social, work and family life (RAIRDA patient survey, n=2300).

We have completed six online focus groups. People reported they wanted the truth about their condition and help adapting to having a rare and serious disease.

Our NHS survey (n=120) found 80% of Rheumatology departments do not provide self-management or psychological support for people with rare autoimmune rheumatic diseases.

Aims and Objectives The overall aim is to provide self-management and psychological support for people with rare autoimmune rheumatic diseases. The first objective of this project is to ensure the support is relevant and acceptable for a range of people. We will do this by reaching people who may not have been involved in research before.

The second objective is to gain agreement on the content and structure of the support intervention.

Methods A steering committee comprising three patient research partners with lived experience of lupus and vasculitis, and clinical researchers will oversee the study in three work packages. Work package one: Six focus groups, two in each location (Bristol, Weston-Super-Mare and Leeds). Co-organised with community groups to explore support needs.

Data will be analysed using content analysis. This process will inform potential topics and delivery options for the support intervention.

Work package two: Large-scale UK patient survey to identify preferences on content and structure of a potential intervention.

Paper versions available in NHS departments, translated into 10 commonly spoken languages, or online in collaboration with patient charities.

Work package three: We will use the results of the focus groups and survey to a draft logic model to outline the content and structure of a new intervention.

This model will include underpinning psychological theories to explain how we think the intervention will work to improve specific outcomes of importance.

We will present the draft model at a stakeholder meeting including patient partners, charities, NHS management and healthcare professionals.

The meeting will ask how we can balance support needs of people with rare autoimmune rheumatic diseases within the current NHS. The logic model will be amended based on stakeholder feedback. We will then use this to guide the next stage of research, to co-design the details of the intervention.

Timelines for delivery We will start the project in July 2024, and present the results of the focus groups, UK survey and logic model at the stakeholder meeting in Autumn 2025.

Anticipated Impact and Dissemination We will work with patient partners to co-design dissemination strategies including the stakeholder meeting, peer-review publications and conferences, community events, and lay summaries.

The overall aim is to design an intervention that is feasible and effective for use in all Rheumatology departments across the UK.