Throughout the course of their disease, individuals with systemic lupus erythematosus (SLE) face considerable physical, psychological and social challenges. The disease has profound effects on health-related quality-of-life (HRQoL), which have been documented extensively in the literature (1). Capturing decrements and improvements in HRQoL has therefore become important in clinical research in SLE, and is advocated by both the U.S. Food and Drug Administration (FDA) in providing guidance to SLE clinical trialists as well as the Outcome Measures in Rheumatology Clinical Trials (OMERACT) group (2, 3). Here I review three measures designed to ascertain HRQoL in SLE, the Lupus Quality of Life (LupusQoL), SLE-specific Quality of Life questionnaire (SLEQoL) and SLE Quality of Life Questionnaire (L-QoL) (Table 1). These measures were chosen because they were developed and specifically designed as patient-reported outcome measures to assess quality of life in SLE and have all had some published validation testing to date.
Most studies examining HRQoL in SLE have employed generic measures, such as the Medical Outcomes Study Short Form (SF-36) (4). An advantage of generic instruments is that they allow comparison of the HRQoL in SLE to other related conditions or to population norms, something that has been useful in documenting that SLE has similar or worse HRQoL decrements compared to other severe chronic conditions (5). In addition, many generic instruments have undergone extensive validation testing and are adapted in multiple languages and cultures.
However, a disadvantage of employing generic instruments alone in SLE is that they may not adequately capture symptoms or issues that are specific to the disease. This may reduce their sensitivity to detect meaningful changes over time. For example, some, but not all, studies suggest that the SF-36 is insufficiently responsive in longitudinal studies or trials in SLE (6, 7), and may lack domains that are particularly relevant to a population with SLE, such as fatigue or sleep (8). The three SLE-specific instruments reviewed here have been developed to address some of these potential limitations. As discussed below, preliminary validation work is available for each of these instruments in defined populations.