Inflammatory Arthritis, Palliative Care
Conditions
Keywords
Inflammatory arthritis, Palliative Care
Brief 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: The investigators will explore the potential role of Palliative and Supportive Care (PSC) for people with inflammatory arthritis. The investigators will describe any unmet patient need. The investigators will develop clinical and research recommendations to help people with inflammatory arthritis live well over the course of their disease. Plan: The investigators research will be conducted in three studies: Study 1: The investigators 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: The investigators 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: The investigators 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 the group will discuss the 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
Interventions
N/A as observational study
Sponsors
Dorothy House Hospice
University of the West of England
Royal United Hospitals Bath NHS Foundation Trust
University Hospitals Bristol and Weston NHS Foundation Trust
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Adults (\> 18 years) with a diagnosis of arthritis (Rheumatoid, Psoriatic or Juvenile Idiopathic) or Axial Spondyloarthritis * able to understand and communicate in verbal and written English (or via an interpreter nominated by the participant or provided via an agency by the research team) * in receipt, or not in receipt of Palliative Care services * access to Microsoft Teams or a telephone * consent to sharing preferred contact details
Exclusion criteria
* Cognitive impairment that impedes communication * non-English speaker (should an interpreter not be available).
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Primary outcomes | through to study completion, an average of one year | The primary outcomes for this research will be: * A description of the nature and scope of unmet patient need, * Clinical and research recommendations, informed by expert opinion and the 'six pillars' framework of the British Society of Lifestyle Medicine, which describe the potential role of PSC for people with inflammatory arthritis throughout the disease course. * Patient identified areas of importance which should be measured in future work. |
Countries
United Kingdom
Contacts
CONTACTDr Sharon Grieve Research Development and Delivery Lead, DPhil
Outcome results
None listed