A Convergent Mixed-methods Study of the User Perspectives for an Individualized, Computerized, Collaboratively Produced, Evidence-based Patient Self-administered Systemic Lupus Erythematosus Decision Aid.

OBJECTIVES

Elicit patient feedback on a computerized systemic lupus erythematosus (SLE) patient decision aid (PtDA).

METHODS

We embedded a mixed-methods study in a multicenter SLE PtDA implementation project at 15 US rheumatology clinics during 2019-2023. A patient self-administered survey included questions on the acceptability of information quality (6-item), the amount of information, the inclusion of enough information for decision-making, the usefulness of the SLE PtDA in decision-making, and whether it was balanced (1-item each). Qualitative assessment was with 2 open-ended questions: (1) What did you like about the decision aid? (2) What suggestions do you have to improve the decision aid?

RESULTS

A high proportion of 1895 SLE patients, 78% to 92%, rated the acceptability of the information quality of SLE PtDA as good to excellent. Of participants, 82% rated the amount of information as just right; 79% reported inclusion of enough information; 90% found it useful for making SLE therapy decisions; and the presentation of the data in the SLE PtDA was balanced for 82%. The top 3 responses about what participants liked were: (1) SLE PtDA content (39.2%), (2) positive experience (36.6%), and (3) its format and design (9.0%). The top 3 suggestions about improving the SLE PtDA were: (1) provide information about treatment options and medication (14.7%), (2) improve the design (13.6%), and (3) provide more information (5.7%).

CONCLUSIONS

The SLE PtDA met patients' expectations for information amount and quality in a mixed-methods study. SLE PtDA was modified based on target population feedback.