Patients’ experiences of managing their rare rheumatic disease
Rattachement africain : gb. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
OBJECTIVES: The 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. METHODS: Participants 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. RESULTS: Twenty-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. CONCLUSION: This 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.
Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.
Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Patients’ experiences of managing their rare rheumatic disease
- Date Crossref
- 14/06/2025
- Éditeur
- Oxford University Press (OUP)
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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University of the West of England pays non établi dans la noticeUniversité ou école supérieure
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University Hospitals Bristol NHS Foundation Trust pays non établi dans la noticeÉtablissement de santé
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University Hospitals Bristol and Weston NHS Foundation Trust Rheumatology Department pays non établi dans la noticeÉtablissement de santé
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Nottingham University Hospitals NHS Trust pays non établi dans la noticeÉtablissement de santé
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School of Health and Social Wellbeing pays non établi dans la noticeUniversité ou école supérieure
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Nottingham University Hospitals NHS Foundation Trust pays non établi dans la noticeUniversité ou école supérieure
University of the West of England, University Hospitals Bristol NHS Foundation Trust et Rheumatology Department — University Hospitals Bristol and Weston NHS Foundation Trust, avec 3 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.