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.

Background There have been major developments in healthcare services as well as changes in demographics in recent years, and this has, among other things, led to increased demand for ambulance services. In general, this has also led to calls for more highly educated paramedics. Main body Erasmus + provided a grant for three universities and one public service provider in four Nordic countries to work on a harmonised model curriculum for a bachelor’s degree in paramedic education. The project group has now completed the first phase of the project, which was to examine what paramedic education is available in the participating countries and what laws and regulations affect both the operation of ambulance services and the education of paramedics. At the end of the project, a harmonised exemplary curriculum will be available to anyone interested in educating paramedics at the university level. Conclusions The growing need for highly educated paramedics should be addressed by offering a bachelor’s degree university education with an exemplary curriculum and coordinating it within Europe. The added value of a harmonised education programme within Europe would thus enable further and deeper collaboration.

Background Healthcare workers have reported increased anxiety while working in hospitals during the COVID-19 pandemic, and the role of healthcare students in a health crisis has been discussed among clinicians and researchers. The simultaneous international shortage of personal protection equipment (PPE) during the first wave of the pandemic potentially exposed healthcare workers and students to the virus during their work and clinical training. Our aim was therefore to evaluate the extent to which paramedic students in Oslo, Norway, were exposed to the SARS-CoV-2 virus and were involved in voluntary and/or paid healthcare-related work. An evaluation was also made of the students’ COVID-19-related symptoms and of their health-related quality of life (HRQoL) during the first wave of the pandemic. Methods Paramedic students (n = 155) at Oslo Metropolitan University, Norway, were invited to complete an online survey five months after the first cases of COVID-19 were detected. The university was situated in the epicenter of the pandemic in Norway. The responses were analyzed using descriptive statistics, independent sample t-tests, and linear regression analysis. Results Of the 109 respondents (70.3%), 40 worked in patient-related healthcare work. Of those, seven (17.5%) students experienced insufficient supplies of PPE, six (15.0%) participated in aerosol-generating procedures without adequate PPE, and nine (22.5%) experienced insufficient time to don PPE. Seventy-five (70.1%) students experienced no COVID-19-related symptoms, and no students tested positive for COVID-19. HRQoL was scored 0.92 (sd 0.12), which was significantly higher than for the general population before the pandemic (p = 0.002). Students continued with their education and participated in a variety of pandemic-related emergency tasks during the first wave of the pandemic. Conclusions Paramedic students were valuable contributors to the national pandemic response. Despite potential exposure to SARS-CoV-2 in unpredictable emergency settings with limited supplies of personal protection equipment, no students tested positive for COVID-19. Their health-related quality of life remained high. Students’ participation and utilization in similar health crises should be considered in future health crises.

ObjectiveTo report the results of a survey exploring the experience of patients with SLE facing hydroxychloroquine (HCQ) shortage that occurred during the early phases of the COVID-19 pandemic.MethodsA survey was designed by Lupus Europe’s patient advisory network and distributed through its social media, newsflash and members' network. People with lupus were asked about their last HCQ purchases and their level of anxiety (on a 0–10 scale) with regard to not being able to have access to HCQ, once in April 2020 (first wave) and after 11 August (second wave). The results were compared.Results2075 patients responded during the first wave; 1001 (48.2%) could get HCQ from the first place they asked, 230 (11.1%) could get the drug by going to more than one pharmacy, 498 (24.0%) obtained HCQ later from their usual pharmacy and 126 (6.1%) from other sources. 188 (9.1%) could not get any; 32 (1.5%) did not respond to this question. All countries showed significant improvement in HCQ availability during the second wave. 562 (27.4%) patients reported an extremely high level of anxiety in wave 1 and 162 (10.3%) patients in wave 2; 589 (28.7%) and 268 (17.1%) patients reported a high level of anxiety in wave 1 and wave 2, respectively.ConclusionsThe HCQ shortage had a significant impact on patients with SLE and has been responsible for psychological consequences including anxiety. Indeed, despite an objective improvement in drug availability, the event is leaving significant traces in patients’ mind and behaviours.

BackgroundUse of hydroxychloroquine (HCQ) is common in patients with lupus erythematosus. Long-term use (ie, ≥5 years) and high-dose HCQ (ie, >5 mg/kg/day) are both risk factors for developing HCQ retinopathy. Advances in our understanding of HCQ retinopathy have led to changes in the recommendations for HCQ dosing and retinopathy screening. The latest EULAR guidelines for the management of SLE recommend a maximum HCQ dose of 5 mg/kg/day and ophthalmological screening at baseline and annually after 5 years of HCQ treatment.ObjectivesThis study aimed to assess whether the EULAR guidelines are affecting HCQ prescription patterns and screening frequencies in Europe. Furthermore, we inventoried adherence to HCQ.ResultsThe online questionnaire was completed by 2936 patients with systemic, cutaneous or juvenile lupus from 33 countries. The majority were female (86.5%) and diagnosed with SLE (81.2%). Among those taking HCQ, the median HCQ dose reported was 4.26 mg/kg/day. More than one-third of respondents (36.8%) exceeded the recommended maximal HCQ dose of 5 mg/kg/day. Baseline ophthalmological screening had been done in 857 out of 1017 respondents diagnosed in the past 10 years (84.3%). Of patients using HCQ ≥5 years, 69.2% reported yearly retinopathy screening. Lastly, 17.3% of patients reported that they skipped HCQ once a week or more often.ConclusionThe results of our study demonstrate that higher than recommended dosages of HCQ are prescribed to more than one-third of patients with lupus in Europe. Recent recommendations regarding screening for retinopathy are incompletely implemented.

ObjectivePrevious research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large and heterogeneous. In this paper, we aimed to identify, in a large sample of patients with SLE (N=3222), the most frequent words used by patients to describe their coping strategies, to group them into significant themes and to test their possible association with specific patient characteristics.MethodsOur analyses were based on the data set of the European survey ‘Living with Lupus in 2020’ (N=3222). Through the T-LAB software, we analysed the answers that adult participants gave to an open-ended question about how they cope with the disease. We identified the most frequent words, and with hierarchical cluster analysis we grouped them into semantic clusters (ie, themes) that were characterised by specific patterns of words. Finally, we tested the possible association between clusters and illustrative variables (sociodemographics, disease characteristics, quality of life).ResultsFive coping strategies were identified, each of them constituting an important percentage of the total word occurrences: positive attitude (22.58%), social support (25.46%), medical treatments (10.77%), healthy habits (20.74%) and avoid stress (20.45%). Each strategy was statistically associated with specific patient characteristics, such as age and organ involvement.ConclusionsLearning to adapt to a lifetime of having SLE may require replacing old coping strategies with more effective ones. Investigating patients’ coping strategies in relation to different patient characteristics represents a useful starting point for developing more targeted and efficacious interventions.

Despite promising candidates for new therapeutic options in the treatment of systemic lupus erythematosus (SLE), many clinical trials have failed in the past few years. The disappointing results have been at least partly be attributed to trial designs. With the aim of stimulating new developments in SLE trial design, an international open space meeting was held on occasion of the European Lupus Meeting 2018 in Duesseldorf, Germany about ‘What are the topics you care about for making trials in lupus more effective?’. The Open Space is a participant-driven technology, where the discussion topics and schedule are selected during the meeting by all participants and discussion rounds are led by the people attending encouraging active contributions. Eleven topics were selected for further discussion, of which 6 were voted to be more intensively discussed in two consecutive rounds. Major topics were the optimal handling of glucocorticoids in clinical trials, the improvement of outcome measures, reducing or controlling the placebo response and the identification of biomarkers and stratification parameters. Further, the importance of local and international networks was emphasised. By networking, collaborations are facilitated, patient recruitment is more efficient and treatment can be harmonised thus lead to more successful SLE trials. Further discussions are needed to substantiate the results and develop new trial designs.

Patient and public involvement: ePAG were involved in the work as members of the Task Force. Disclaimer: ERN ReCONNET is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission. The content of this publication represents the views of the authors only and it is their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency (CHAFEA) or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains.