Patients’ experiences of managing their rare rheumatic disease
Authors' conclusion
This study found that patients shared experiences regardless of their specific RAIRD, suggesting that a combined intervention could meet their common support needs.
Study context
- Population
- UK patients with a range of rare autoimmune rheumatic diseases (SLE, systemic vasculitis, inflammatory myositis, SSc, SD), recruited via social media incl. patient charity networks6 focus groups
- Participants
- 26 patients
- Outcome
- Patients' experiences of living with and managing their RAIRD
Methodological detailsfocus groups, online video conferencing, purposive sampling, thematic analysis, Topic guide developed with patient partners, Data analysed thematically by an academic psychologist and rheumatologist
- Focus groups
- Online video conferencing
- Purposive sampling
- Thematic analysis
- Topic guide developed with patient partners
- Data analysed thematically by an academic psychologist and rheumatologist
Main finding
As reported in the abstract
Themes identified
- Managing healthcare systems and health professionals
- Luck of the draw: variation in access and resources
- Trustworthy and reliable sources of support
- Support to live well: core care or an added extra
- Dealing with the emotional fallout
- Five themes identified
Further findings
Participant characteristics
- Median age, years (range 34-82)
- 62
- Female, n (%)
- 21 (80%)
- Diagnosis longer than the last 2 years, n (%)
- 21 (80%)
Original publication
Patients’ experiences of managing their rare rheumatic disease. Rheumatology (Oxford). Published 14 June 2025. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →