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Rheumatology (Oxford, England) · 2026

Describing flares: a mixed methods study comparing patient and clinician perspectives in systemic lupus erythematosus and other rheumatic diseases.

СтатьяСравнительное исследованиеНазвание и аннотация: Перевод в очереди
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Piper Martha A, Tunks Alice, Bourgeois James A, Calderwood Lucy, D'Cruz David, Bortoluzzi Alessandra, Arunasalam Arjoon, Tayabali Shaista, Taylor Sydnae, Saha Pratyasha, Yates Max, Hamilton-Conaty Paige, Kaul Arvind, Sloan Melanie

Аннотация

OBJECTIVES: Systemic autoimmune rheumatic diseases (SARDs) relapse and remit, with periods of increased disease activity called 'flares'. This study compared patient and clinician perspectives of flares.

METHODS: Mixed-methods approach combining an international co-produced survey and in-depth interviews. SLE patients and clinicians rated statements about flares on Likert scales from 'never' to 'always'. Quantitative data were analysed using t tests and ANOVA. Patient and clinician interviews were analysed thematically. Quantitative and qualitative analyses were triangulated by exploring converging, diverging and explanatory findings across the datasets.

RESULTS: Qualitative (N = 31 SARD patients, N = 12 clinicians) and quantitative (N = 443 SLE patients, N = 258 clinicians) results indicated differential patient and clinician perspectives. The main themes identified were: characteristics/consequences of flares; recognition of flares; and treatment for flares (medical and/or self-management). Patients and clinicians had significantly different mean ratings for 12/17 flare statements. Notably, regarding flare onset, 39% of patients compared with 14% of clinicians said flares 'often' or 'always' started within minutes or hours (P < 0.001). We found differences in identification of flares, with patients rating 'patient can tell' significantly higher than clinicians (P < .001), including awareness of prodromal symptoms. Clinicians were significantly more likely to think flares required increased (P = 0.005) or new (P < .001) medication. There was consensus about the impact of flares on wellbeing.

CONCLUSION: We highlight differences in how SARD patients and clinicians describe flares, notably related to onset, recognition and intervention. These differences challenge the prevailing reliance on clinician-derived disease activity measures and biomarkers for flare assessment, highlighting the need for integration of patient and clinician perspectives.

Предметные рубрики MeSH

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

Реквизиты и контакты