Patient-Reported Disease Activity, Health-Related Quality of Life, and Coping in Systemic Lupus Erythematosus: A Cross-Sectional Online Survey in Switzerland (Lupus-IMPACT)

The impact of systemic lupus erythematosus (SLE) on the quality of life is differently perceived by patients and physicians. This survey explored the patient perception of SLE burden, challenges, and strategies of coping. Adults with a self-reported physician-diagnosis of SLE, living in Switzerland, were recruited to participate in a cross-sectional online survey through a patient association, a physician-confirmed national SLE registry, and a digital campaign. Health-related quality of life (HRQoL) was assessed using the Lupus Patient-Reported Outcome scale (LupusPRO®), disease activity using the Systemic Lupus Activity Questionnaire (SLAQ), and coping using the Brief Coping Orientation to Problems Experienced (COPE) inventory, in addition to a patient satisfaction questionnaire. Between February and June 2024, 146 participants completed the survey. Participants had a median age of 48.5 years (IQR 25), and 85.6% were female. Nearly all participants (92.5%) were receiving pharmacological treatments, with a median of six medications taken daily. In the preceding three months, patients reported mild (36.3%), moderate (21.9%), and severe (6.8%) flares. Participants reported impaired HRQoL, with especially affected domains of emotional health, cognition, pain and fatigue. Predominant coping domains were problem-focused in 106 participants (72.6%), emotion-focused in 25 (17.1%), avoidant-focused in 11 (7.5%), tied problem-/emotion-focused in 2 (1.4%), and tied problem-/avoidant-focused in 2 (1.4%). Fatigue reduction was the treatment goal most often reported by participants. In this cross-sectional Swiss survey, patients with SLE reported impaired HRQoL, frequent recent flares, and fatigue reduction as the most common treatment priority despite ongoing therapy. Problem-focused coping was the predominant coping style. These findings underscore the value of patient-reported outcomes in complementing clinical assessment and capturing patient-important disease burden. However, potential selection, non-response, confounding, and diagnostic uncertainties limit generalisability, and the cross-sectional design precludes conclusions about causality or intervention benefit. Systemic lupus erythematosus, often called lupus, is a long-term autoimmune disease that can affect many parts of the body and can have a major impact on daily life. This study asked adults with lupus living in Switzerland about their symptoms, quality of life, coping strategies, treatment satisfaction, and treatment goals. In total, 146 participants completed an online survey between February and June 2024. Many participants reported recent disease flares, and overall quality of life was reduced, especially in relation to emotional health, cognition, pain, and fatigue. Although most participants were receiving treatment for lupus, reduction of fatigue remained the treatment goal most often reported as important. Most participants used problem-focused coping strategies, such as active coping and planning, to manage the challenges of living with lupus. These findings show that patient-reported outcomes can provide important information about aspects of lupus that matter most to patients and may not always be fully captured during routine medical consultations.