ArticleRheumatology (Oxford, England)2025
Patients' experiences of managing their rare rheumatic disease.
Article in Rheumatology (Oxford, England), 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
- "My world has shrunk": a mixed-methods exploration of the impact of systemic autoimmune rheumatic diseases on patients' lives.Rheumatology international · 2025Article
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
objectivesThe rare autoimmune rheumatic diseases (RAIRDs) include SLE (lupus), systemic vasculitis, inflammatory myositis, SSc and sjogren's disease (SD). The objective of the study is to understand patients' experiences of living with and managing their RAIRD.
methodsParticipants from the UK with a range of RAIRDs were recruited via social media including patient charity networks. Purposive sampling was used to include a range of participants with different conditions and demographic characteristics. A topic guide was developed with patient partners to guide discussions about health-related quality of life with RAIRDs, including support needs. Focus groups were conducted via online video conferencing, audio-recorded, transcribed, checked and anonymized. Data were analysed thematically by an academic psychologist and rheumatologist.
resultsTwenty-six patients with RAIRDs participated in six focus groups (between three and six people per focus group). The median age was 62 years (range 34-82), 21 (80%) were female and 21 (80%) had a diagnosis longer than the last 2 years. Five themes were 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; and dealing with the emotional fallout.
conclusionThis study found that patients shared experiences regardless of their specific RAIRD, suggesting that a combined intervention could meet their common support needs. Further large-scale work is required, including people who may not usually take part in research, to explore the potential content and structure of such an intervention.
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