Assessment of Health-Related Quality of Life in Systemic Lupus Erythematosus

Abstract

With the improving life expectancy in systemic lupus erythematosus (SLE), the assessment of health-related quality of life (HRQoL) has become an important outcome measure in these patients. SLE is an autoimmune multisystem disease that tends to affect women of childbearing age and has a significant impact on the HRQoL comparable to that of more common rheumatological and medical illnesses. Assessing HRQoL alongside disease activity and damage captures the patients’ perspective of the impact of the disease and its treatment on their lives. Generic questionnaires, in particular, the SF-36, are the most common questionnaires for assessing HRQoL in SLE. However, in the last 15 years, SLE-specific questionnaires have been developed and validated, and they have the added advantage of assessing issues more relevant to patients with SLE. They are more sensitive to the changes in HRQoL and therefore more useful when assessing patient-reported outcomes in clinical trials of new interventions for SLE patients. This chapter describes the content of generic and SLE-specific measures and presents evidence for the quality of the scale development and psychometric evaluation of the SLE-specific HRQoL scales.