Measuring What Matters: A qualitative Study of the Relevance and Clinical Utility of PROMIS Surveys in Systemic Lupus Erythematosus

Objective. To evaluate the relevance and clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) surveys in patients with systemic lupus erythematosus (SLE). Methods. Adults with SLE receiving routine outpatient care at a tertiary care academic medical center participated in a qualitative study. Patients completed PROMIS computerized adaptive tests (CATs) in 12 selected domains and rated the relevance of each domain to their experience with SLE. Focus groups and interviews were conducted to elucidate the relevance of the PROMIS surveys, identify additional domains of importance, and explore the utility of the surveys in clinical care. Focus group and interview transcripts were coded, and a thematic analysis was performed using an iterative inductive process. Results. Twenty-eight women and 4 men participated in 4 focus groups and 4 interviews, respectively. Participants endorsed the relevance and comprehensiveness of the selected PROMIS domains in capturing the effect of SLE on their lives. They ranked fatigue, pain interference, sleep disturbance, physical function, and applied cognition abilities as the most salient health-related quality of life (HRQOL) domains. They suggested that the disease-agnostic PROMIS questions holistically captured their lived experience of SLE and its common comorbidities. Participants were enthusiastic about using PROMIS surveys in clinical care and described potential benefits in enabling disease monitoring and management, facilitating communication, and empowering patients. Conclusion. PROMIS includes the HRQOL domains that are of most importance to individuals with SLE. Patients suggest that these universal tools can holistically capture the impact of SLE and enhance routine clinical care.