Exploring perspectives on Palliative and Supportive Care, to inform recommendations to help people live well with inflammatory arthritis throughout the disease course. (ENRICH)

Background Palliative Care (PC) focuses on maximising quality of life and care for patients and their families in the last 1000 days of life. Supportive Care (SC) is provided earlier in life for people with a long-term health condition. SC helps patients to maximise treatment benefits and to live as well as possible with the effects of their condition. There are no Supportive Care services for people with arthritis and many people are unable to access Palliative Care, especially people with a non-cancer diagnosis. People living with inflammatory arthritis, (such as rheumatoid arthritis) can experience ongoing pain, stiffness, limitations in their joints, and intrusive fatigue. This impacts daily living activities and emotional well-being. These conditions may affect other areas of the body, such as the lungs, which can shorten life expectancy. The side-effects of prescribed medications can increase the risk of additional life limiting conditions, such as heart disease. People with inflammatory arthritis have told us they would value support to manage symptoms across the course of their disease. They would like PC healthcare professionals (HCPs) to understand their conditions better, so they can live well to the end of their lives. Rheumatology and PC HCPs have told us they have no guidance about how to work together to maximise quality of life for people with inflammatory arthritis. No research has been done to explore this gap in care, or define what that gap might be. Aim and purpose We will explore the potential role of Palliative and Supportive Care (PSC) for people with inflammatory arthritis. We will describe any unmet patient need. We will develop clinical and research recommendations to help people with inflammatory arthritis to live well over the course of their disease. Plan We will create three 60-second videos to help participants understand PSC services and inflammatory arthritis, which we will use throughout our research. Working in partnership with people with inflammatory arthritis, our research will be conducted in three studies: Study 1 We will conduct 1:1 online interviews with people with inflammatory arthritis to understand how PSC is perceived by them, and what their views are on how PSC may support them to live well. Study 2: We will send an online survey to Rheumatologists and PC HCPs to understand: if and how they work together currently; their views on the role of PSC supporting people with inflammatory arthritis to live well. Study 3: We will conduct online focus groups with volunteers from Studies 1 and 2, representatives from relevant national charities/organisations, and people who commission health services. Together we will discuss our research findings and agree: what the gap in patient care is; recommendations for future clinical practice and research; the key areas of importance for patients which should be measured in future work. Patient benefit These recommendations will be shared with people with inflammatory arthritis, clinicians, academics and service commissioners. Future work will explore how to implement the recommendations into practice to improve the lives of people with inflammatory arthritis.