Iterative Modification and Finalization of a Patient Decision-Aid for Immunosuppressive Medication Treatment Decision-Making in Systemic Lupus Erythematosus by a Racially Diverse Patient Group

Objective: To describe the patient-feedback process for iterative modification and finalization of the systemic lupus erythematosus (SLE) decision-aid. Methods: We invited SLE patients during their regular outpatient visits to review the English or Spanish version of the SLE decision-aid on a touchpad computer. They provided qualitative and quantitative feedback on style, content, and usefulness of SLE decision-aid. Results: Twenty-two racially diverse SLE patients, from 2 academic medical centers, reviewed the SLE decision-aid. Most patients found SLE decision-aid easily understandable, clear, and concise. Patients found a variety of different content interesting, such as the sections on steroids, and premenopausal women, and how the graphs helped them understand the information. The content helped patient understanding and provided clarity about SLE management. All the people with SLE found the information in the lupus decision-aid important. Most respondents (>75%) each agreed that the use of SLE decision-aid would have made a difference in their initial treatment or strongly agreed that it is important to start treatment to prevent kidney damage. Conclusion: Patient feedback contributed significantly to iterative modification and finalization of the SLE decision-aid, which kept it relevant to all SLE patients.