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

Abstract

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.

Fatigue in Systemic Lupus Erythematosus: An Update on Its Impact, Determinants and Therapeutic Management

“…In a 2020 survey analyzing the burden of SLE from the patients' perspective in European countries [4], fatigue was described as the most common symptom (affecting 85.3% of the 4375 respondents) and the most bothersome symptom, which is consistent with previous studies. Fatigue is reported as severe in intensity in more than a third of SLE patients [4].…”

“…The role of psychological determinants is therefore major in SLE fatigue. Consequently, it is crucial to suggest a thorough psychological assessment of SLE patients reporting severe fatigue, especially for those with no or low disease activity, since mood disorders are frequent in patients with SLE [4,21,[30][31][32] and multifactorial.…”

Treatment Patterns and Clinical Characteristics of Patients with Systemic Lupus Erythematosus and Musculoskeletal Symptoms: A Retrospective, Observational Study

“…For the overall SLE-MSK subpopulation, disease activity remained mild with high mean and maximum corticosteroid use, together with high use of combination therapy, which may presumably explain the disease activity scores we found. These patients presented with additional manifestations including mucocutaneous (82%), immunological (almost half of whom were positive for anti-dsDNA antibody [47%]), and renal manifestations (31%), consistent with previous reports of organ involvement and symptoms in SLE [ 22 ].…”

“…While other manifestations are more likely to lead to organ failure and early mortality, MSK symptoms are the main determinant of disease impact that effects a greater number of patients [ 23 ]. Apart from fatigue, in a recent study on the burden of SLE the majority of patients reported joint involvement as the most predominant manifestation they would like to get rid of [ 22 ]. Additional research has demonstrated the strong correlation of SLE-MSK symptoms with reduced health-related quality of life, with only arthralgia being significantly associated with work disability [ 24 – 26 ] and at the same time the most important modifiable factor in disability in patients with SLE.…”

Difficulties and Psychological Impact of the SARS-CoV-2 Pandemic in Patients with Systemic Lupus Erythematosus: A Nationwide Patient Association Study

“…The conjunction of these factors, together with consecutive lockdowns and uncertainties linked to the COVID-19 pandemic, were major hardships for SLE patients. Considering the baseline negative impact of SLE on patients’ quality of life and psychological health [ 5 ], the COVID-19 pandemic may have taken a huge toll on the psychological health of these patients. Indeed, a Danish study conducted on more than 5000 patients with autoimmune diseases identified difficulties with shielding at work as major determinants of anxiety in these patients [ 6 ].…”