Living with systemic lupus erythematosus in 2020: a European patient survey.

OBJECTIVE: The aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients' perspective. METHODS: In May 2020, Lupus Europe, the European umbrella patient association for SLE, designed and disseminated a multilingual anonymous online survey to individuals with a self-reported physician's diagnosis of SLE living in Europe. RESULTS: Data from 4375 SLE survey respondents (95.9% women, median age: 45 (IQR: 36-54) years, 70.7% Caucasians) from 35 European countries were analysed. The median age at SLE diagnosis was 30 years (IQR: 22-40) and the median diagnosis delay was 2 years (IQR: 0-6). The most commonly affected organ-systems included the joints (81.8%) and skin (59.4%), with renal involvement in 30%. Another diagnosis was given before that of SLE in 45.0%, including psychological/mental disorders in 9.1% and fibromyalgia in 5.9%. The median number of symptoms reported was 9 (IQR: 6-11) out of 21, with fatigue most common (85.3%) and most bothersome. The median number of SLE-related medications was 5 (IQR: 3-7), including antimalarials (75%), oral glucocorticoids (52.4%), immunosuppressants (39.8%) and biologics (10.9%). Respondents reported significant impact over their studies, career and emotional/sexual life in 50.7%, 57.9% and 38.2%, respectively. Appropriate access to care was highly variable across countries and care component. CONCLUSION: This survey underlines the 2020 burden and strong heterogeneity in the care of SLE across Europe, from the patient's perspective. Altogether, these data may prove crucial to physicians, patients and policy-makers to improve the diagnosis and management of this rare and complex disease.

Living with systemic lupus erythematosus: A patient engagement perspective.

Patient engagement is recognized as a crucial component of high-quality healthcare services. Among rheumatic diseases, systemic lupus erythematosus (SLE) appears particularly challenging for the engagement of patients in their own care. According to the patient health engagement (PHE) model, patient engagement is a dynamic phenomenon that proceeds through four experiential positions (blackout, arousal, adhesion and eudaimonic project). The aim of the present study was to describe the engagement process from the point of view and the experiences of SLE patients. Ten in-depth interviews and four focus groups were conducted with an international sample of SLE patients from different European countries. Transcripts were analysed through thematic content analysis. Findings showed that a fully engaged patient results from reframing emotional, cognitive and behavioural dimensions. The advances along the process depends on how the patient succeeds in each position. In conclusion, PHE represents an appropriate model by which to understand the engagement process of SLE patients. In order to meet patients' needs, healthcare providers and patient support groups should consider the specific position of SLE patients, providing adequate and tailored support.