ObjectiveThe aim of this study was to analyse the 2020 burden of Systemic Lupus Erythematosus (SLE) in Europe, from the patients’ perspective.MethodsIn 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.ResultsData 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.ConclusionThis 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.

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.

This study describes the survival cases of two local savings banks in Finland during fundamental changes in 1990’s when 90% of the Finnish Savings Bank Group did not survive. Survival is studied through the roles of the non‐executive boards and the CEOs in the context of three change periods. Institutional theory is used as a framework in describing and explaining the survival. The cases describe how radical renewals can be made despite dominant actors and generally agreed ways of change in the field. It is suggested that the CEO and the non‐executive board of directors were in a key role in changing the future of a local savings bank. Old institutions can die, but the active role of the small banks themselves was decisive; by taking active role they recreated and renewed their organizations (c.f. Greenwood and Hinings 1996).

Quantitative real-time polymerase chain reaction: NK cells were sorted from using isolation kit from stemcell TM (cat no.17955). cDNA was synthesized from RNA separated from isolated nk cells. Gene primers were run on the StepOnePlus RealTime PCR Systems and analyzed with StepOne Software V2.1 (Applied Biosystems New York, USA). Results Fraction of cd3-cd56 in pbmc (%) were reduced in SLE patients (5.395%± 0.6900 N=27) as compared to healthy control (10.32 ± 1.729 N=16), P Value0.0037

in SLE, defined according the ACR criteria of 1999. Study selection and data extraction was made in duplicate. We secured salient study characteristics, composition of cohorts, the definitions and the frequencies of neuropsychiatric manifestations. We assessed heterogeneity across reports and investigated sources of variation using meta-regression models. Results The frequencies of severe manifestations found in the SSLE were 7.1% (49/688) for cerebrovascular events, 5.3% (37/688) for seizures and 6.5% (45/688) for psychosis. The time-to-event analysis showed a linear relationship between duration of SLE and cumulative incidence of severe neuropsychiatric manifestations. Searches identified 530 studies and authors' contact yielded another unpublished report. We included 28 studies. The mean rates of the most commonly reported severe neuropsychiatric manifestations ranged in the magnitude of 50 percent points. Study characteristics and composition of cohorts could not explain heterogeneity of reported manifestation rates. Conclusions The spectrum of neuropsychiatric manifestations in SLE is widely dispersed. The diagnostic work-up and the reporting of manifestations varied substantially across studies which may explain inconsistencies to some extent. We call for concerted efforts and a broad consensus regarding stringent definitions of neuropsychiatric SLE manifestations that allow targeted detection, particularly with view to timely intervention and patient outcomes.

in SLE, defined according the ACR criteria of 1999. Study selection and data extraction was made in duplicate. We secured salient study characteristics, composition of cohorts, the definitions and the frequencies of neuropsychiatric manifestations. We assessed heterogeneity across reports and investigated sources of variation using meta-regression models. Results The frequencies of severe manifestations found in the SSLE were 7.1% (49/688) for cerebrovascular events, 5.3% (37/688) for seizures and 6.5% (45/688) for psychosis. The time-to-event analysis showed a linear relationship between duration of SLE and cumulative incidence of severe neuropsychiatric manifestations. Searches identified 530 studies and authors' contact yielded another unpublished report. We included 28 studies. The mean rates of the most commonly reported severe neuropsychiatric manifestations ranged in the magnitude of 50 percent points. Study characteristics and composition of cohorts could not explain heterogeneity of reported manifestation rates. Conclusions The spectrum of neuropsychiatric manifestations in SLE is widely dispersed. The diagnostic work-up and the reporting of manifestations varied substantially across studies which may explain inconsistencies to some extent. We call for concerted efforts and a broad consensus regarding stringent definitions of neuropsychiatric SLE manifestations that allow targeted detection, particularly with view to timely intervention and patient outcomes.

Background Lupus patient's expectations are no different than everyone else's: 'A better life'. But achieving it requires different steps because it entails (1) A prompt diagnosis, (2) Access to effective treatment with low side-effects, (3) Resolving Abstract I6 Figure 1 Delineations of cutaneous diseases.

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