Quality of life (QoL) is significantly worse in people with systemic lupus erythematosus (SLE) than in general population due to the different characteristics of the complex disease. QoL can be seen as an indicator for the satisfaction of individuals with their functioning in daily life and represents the perception of a person's well-being in physical, mental and social domains of life. OMERACT recommends assessing QoL for people with SLE, complementary to disease activity, adverse events and the damage to the organs. In outcome measurement, the use of both generic and disease-specific measures are recommended for persons with SLE. Patient reported outcome measures could be used for persons with rheumatic conditions to enable the inclusion of the patient perspective and to increase the efficacy and effectiveness of health care. However, it is unclear whether patient reported outcome measures on QoL cover the perspectives of people with SLE or not. A suitable approach for the exploration of the patient perspective is a triangulation of qualitative data sets. It can thereby be seen as a chance to increase the confidence of existing as wells as of new data material and could support the identification of “core” concepts which are meaningful to people with SLE. These “core” concepts could be used to explore whether disease-specific QoL-PROMs cover the patient perspective of the target group or not, using the International Classification of Functioning, Disease and Health (ICF) as a frame of reference. A high level of coverage could support health professionals in their choice of QoL-PROMs.
Disclosure of Interest None declared
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