Measuring and monitoring health-related quality of life responsiveness in systemic lupus erythematosus patients: current perspectives

OBJECTIVE: Little is known about health-related quality of life (HRQoL) responsiveness in systemic lupus erythematosus (SLE) patients, compared to other chronic diseases. This review summarizes the available data in HRQoL responsiveness and sensitivity to change in SLE, and recommends directions for research and clinical application. METHODS: A review of the literature was conducted reporting on HRQoL responsiveness in adult SLE patients between 1984 and 2018. HRQoL studies were assessed for responsiveness, sensitivity of change, minimal important differences, minimal clinical important differences, or change in improvement or deterioration. RESULTS: Responsiveness or sensitivity to change in health-related status was observed in Medical Outcome Survey Short Form-36, SLE Symptom Checklist, EuroQoL, and Medical Outcomes Study Short Form 6D. SLE-specific quality of life questionnaire demonstrated greater responsiveness than the individual domains of SF-36. Lupus quality of life showed large responsiveness when there was improvement. LupusPRO and its derivative Lupus Impact Tracker were found to be responsive to change in disease activity, reflecting both improvement and worsening. Lupus Impact Tracker and physical health and pain domains of Lupus quality of life were responsive to SLE composite responder index. CONCLUSION: This review highlights the need for further studies that capture responsiveness and change in HRQoL that are clinically meaningful and sustained. Most importantly, the choice of one measure over another is influenced by the purpose of the HRQoL measure, the particular HRQoL domain, and the SLE disease state that are relevant to the research question.