Developing a Self-Management Support Program for People with Rare Autoimmune Rheumatic Diseases

What this Trial Is About

Researchers are exploring how to develop a self-management and psychological support program for people living with rare autoimmune rheumatic diseases RAIRDs. These diseases, including systemic lupus erythematosus, vasculitis, scleroderma, myositis, and Sjogrens syndrome, are chronic, multi-system conditions that can be life-threatening and significantly impact quality of life. The study aims to gather diverse patient and healthcare team perspectives across the UK to shape a relevant and effective support program. The study involves a series of focus groups with patients from different regions to collect views on support needs, followed by a UK-wide survey available both online and in paper form translated into the ten most spoken languages. The information gathered will be used to build and refine the support program by incorporating feedback from patients, healthcare professionals, and patient partners. This non-interventional, observational study focuses on understanding patient needs rather than testing a treatment. Participants will engage in focus group discussions and complete surveys about their experiences and support preferences. The study measures self-management and efficacy using patient-reported outcome measures during the survey phase. Patient research partners with lived experience help guide the project and dissemination of findings through publications and presentations. The total involvement spans from focus groups through survey completion and collaborative program development, with ongoing contributions from patient partners.

Rare AutoImmune SElf-management Programme Development