Palliative & Supportive Care to help people with arthritis live well
Research type
Research Study
Full title
Exploring perspectives on Palliative and Supportive Care, to inform recommendations to help people live well with inflammatory arthritis throughout the disease course.
IRAS ID
348144
Contact name
Candida McCabe
Contact email
Sponsor organisation
Dorothy House Hospice Care
Clinicaltrials.gov Identifier
Duration of Study in the UK
1 years, 3 months, 23 days
Research summary
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.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. People with inflammatory arthritis 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.
Aims
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 live well over the course of their disease.Plan
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, Primary Care, Community 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.REC name
Social Care REC
REC reference
25/IEC08/0045
Date of REC Opinion
12 Dec 2025
REC opinion
Favourable Opinion