Palliative and Supportive Care to Help People With Arthritis to Live Well (ENRICH)

Официальное название

Exploring Perspectives on Palliative and Supportive Care, to Inform Recommendations to Help People Live Well With Inflammatory Arthritis Throughout the Disease Course (ENRICH)

Обзор

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

Вмешательства

• Другое NONE - observational study
  N/A as observational study

Первичные конечные точки

• Primary outcomes [Срок оценки: through to study completion, an average of one year]

Критерии участия

Критерии включения

• 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

Критерии исключения

• Cognitive impairment that impedes communication
• non-English speaker (should an interpreter not be available).

Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.

Здоровые добровольцы: Нет

Дизайн исследования

Модель наблюдения

Когортное

Центры проведения

Великобритания · 1 центр

• Dorothy House Hospice — Bath

Идентификаторы

NCT: NCT07491939 · 348144 · 23281

Первоисточники (государственные реестры)

• ClinicalTrials.gov (NIH, США)

Открыть это исследование на ClinicalTrials.gov ↗