Patient Experiences of Systemic Lupus Erythematosus: Findings From a Systematic Review, Meta-Summary, and Meta-Synthesis.
Valentina Petrocchi, Erica Visintini, Ginevra De Marchi...
https://pubmed.ncbi.nlm.nih.gov/34133081Actively Recruiting
Age: 18Years +
All Genders
ID06642870
Rare Autoimmune Self-management Programme Development
Led by University of the West of England · Updated on 2024-10-15
360
Participants Needed
1
Research Sites
26 weeks
Total Duration
On this page
Sponsors
U
University of the West of England
Lead Sponsor
U
University of Leeds
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are exploring how to develop a self-management and psychological support program for people living with rare autoimmune rheumatic diseases (RAIRDs). These diseases, including systemic lupus erythematosus, vasculitis, scleroderma, myositis, and Sjogren's syndrome, are chronic, multi-system conditions that can be life-threatening and significantly impact quality of life. The study aims to gather diverse patient and healthcare team perspectives across the UK to shape a relevant and effective support program. The study involves a series of focus groups with patients from different regions to collect views on support needs, followed by a UK-wide survey available both online and in paper form translated into the ten most spoken languages. The information gathered will be used to build and refine the support program by incorporating feedback from patients, healthcare professionals, and patient partners. This non-interventional, observational study focuses on understanding patient needs rather than testing a treatment. Participants will engage in focus group discussions and complete surveys about their experiences and support preferences. The study measures self-management and efficacy using patient-reported outcome measures during the survey phase. Patient research partners with lived experience help guide the project and dissemination of findings through publications and presentations. The total involvement spans from focus groups through survey completion and collaborative program development, with ongoing contributions from patient partners.
CONDITIONS
Brief Title
Rare AutoImmune SElf-management Programme Development
Who Can Participate
Age: 18Years +
All Genders
Eligibility Criteria
You may qualify if you...
- Diagnosis of a rare rheumatic condition by a hospital doctor or specialist, including lupus, systemic vasculitis, myositis, Sjogren syndrome (self-reported)
- Ability to give informed consent, with translation support if needed
- Adults aged 18 years or older
You will not qualify if you...
History of severe allergic reactions to study medication Currently pregnant or breastfeeding Recent participation in another clinical trial within the last 30 days Presence of uncontrolled medical conditions that could affect safety
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
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Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Diagnostic Evaluation
Duration - Several weeks
Participants take part in focus groups to share their views on support needs for rare autoimmune rheumatic diseases.
6 focus group sessions (online)
Surveillance
Duration - Several months
Participants complete a UK-wide survey to assess support needs, available in multiple languages and formats.
Survey completion at participant's convenience
Long-term Monitoring
Duration - Ongoing until study completion
Feedback from survey and focus groups is used to develop and refine a self-management support programme with patient partners and healthcare teams.
Meetings and involvement activities as scheduled
Trial Site Locations
Total: 1 location
1
University of the West of England/ Bristol Royal Infirmary
Bristol, United Kingdom, BS2 8HW
Actively Recruiting
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Research Team
D
Dr J Robson
J
Jen Orme
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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