Patient Perspectives on a Decision Aid for Lupus: Insights and Future Considerations.

Abstract

Systemic lupus erythematosus, is a chronic autoimmune disease with a wide spectrum of clinical manifestations. A decision aid (DA) for lupus was developed and implemented in 15 rheumatology clinics throughout the United States. This study explored the experiences of patients who viewed the DA to understand how patients engage with and respond to the lupus DA. We conducted a qualitative descriptive study using semi-structured interviews with a convenience sample of 24 patients during May-July 2022. Patients recognized the value of the lupus DA, providing general knowledge about lupus and different treatment options. However, patients expressed a desire for more comprehensive lifestyle information to better manage their condition. Another theme was the importance of having multiple formats available to cater to their different needs, as well as tailoring the DA to different stages of lupus. This study contributes to a broader understanding of how to provide patient-centered care for lupus patients by offering practical insights that can inform the development of more effective, patient-centric health-information technologies for managing chronic diseases, ultimately improving patient outcomes. Overall, this study underscores the significance of optimizing both the information content and determining the appropriate delivery of the tool for its future sustainability.