A Patient-Researcher Partnership to Support Mental Health among People with a Rare Autoimmune Disease during COVID-19: the Scleroderma Patient-centered Intervention Network COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program and Trial.

The Scleroderma Patient-centered Intervention Network (SPIN) is an international group of patients, researchers, and clinicians who work together to tackle important problems faced by people with the rare autoimmune disease systemic sclerosis (SSc; Scleroderma). In SPIN, people with SSc work in partnership with researchers to make decisions about what topics to research, how to carry out research to address these topics, and how to share results to people with SSc. At the start of COVID-19, SPIN researchers and patient members met to decide how they could best support others with SSc. They agreed mental health support was a priority and together developed the SPIN COVID-19 Home-isolation Activities Together (SPIN-CHAT) Program. The SPIN-CHAT program aimed to help people with SSc learn coping strategies for their mental health and provide social support. The program was delivered as group sessions, online, over four weeks by peers working with mental health care providers. Research team members with SSc co-designed the intervention and trial and decided the main outcome, anxiety symptoms. We tested whether the program was effective in reducing anxiety symptoms in a randomized controlled trial, which involved randomly allocating 172 participants to receive the program or to a waitlist group to receive the program later. We found the program reduced anxiety symptoms six weeks after the end of the intervention. This means people with SSc involved in the program likely developed new coping skills and benefitted from the social support. SPIN-CHAT was one of only a few high-quality programs that aimed to address mental health problems among groups most affected by COVID-19. The program reflects CIHR's Strategy for Patient-Oriented Research Patient Engagement Framework. We worked in partnership with patients to plan, develop and test the program. People with SSc also helped to interpret what the results mean for patients and share the results with the SSc community.