Abstract
In this study we systematically investigated the health-related quality of life (HRQoL) tools, which have been most often used over the last five years to evaluate the QoL in patients with systemic lupus erythematosus (SLE), focusing on their items and applications. A detailed literature search was conducted: the inclusion criteria were as follows: 1) studies including at least 50 patients; 2) studies including at least 25 patients with SLE; 3) quality of life testing with validated measures. The systematic review was based on 119 studies for a total of 32,449 SLE patients and 3092 controls. A total of 35 different patients-reported quality of life measures, applied in cohorts of patients with SLE, were retrieved with the 36-item Medical Outcome Short Form (SF-36) (63 studies of 119 =52.95%), Lupus Quality of Life (LupusQoL) (17 studies =14.3%) and Lupus Patient-Reported Outcome (LupusPRO) (12 studies =10%) being the most commonly used tools. Overall, this systematic review of the literature indicated that quality of life in patients with SLE appears to be poor and generally lower compared to both the general population and patients with other chronic conditions, as was shown by a few studies that used SF-36 and LupusPRO. The use of HRQoL scoring in SLE is gaining increasing interest and is used both in randomized controlled trials and in real-life. Future efforts are needed to improve the understanding of the impact of the disease burden on quality of life from the patient’s perspective.
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