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Published on: August 1, 2019
A Convergent Mixed-methods Study of the User Perspectives for an Individualized, Computerized, Collaboratively
Jasvinder A Singh1,2,3, Haiyan Qu4
1Medicine Service, Michael E. DeBakey VA Medical Center.
Summary
Systemic lupus erythematosus (SLE) patients found the decision aid highly acceptable, rating its information quality, amount, and usefulness positively. Feedback led to improvements in content and design for better patient decision-making.
Area of Science:
- Rheumatology
- Health Informatics
- Patient Engagement
Background:
- Systemic lupus erythematosus (SLE) management requires informed patient participation.
- Patient decision aids (PtDAs) can support shared decision-making in chronic disease management.
- Evaluating patient feedback is crucial for optimizing digital health tools.
Purpose of the Study:
- To elicit patient feedback on a computerized Systemic Lupus Erythematosus (SLE) patient decision aid (PtDA).
- To assess patient satisfaction with the information quality, amount, usefulness, and balance of the SLE PtDA.
- To identify areas for improvement based on patient input.
Main Methods:
- A mixed-methods study was embedded within a multicenter SLE PtDA implementation project.
- 1895 SLE patients completed a self-administered survey assessing the SLE PtDA's acceptability and usefulness.
- Qualitative feedback was gathered through open-ended questions regarding likes and suggestions for improvement.
Main Results:
- High patient satisfaction was reported, with 78%-92% rating information quality as good to excellent.
- 82% found the information amount "just right," and 79% felt it contained enough information for decision-making.
- Key positive feedback included content, positive experience, and format; suggestions focused on treatment information and design enhancements.
Conclusions:
- The SLE PtDA generally met patient expectations regarding information quantity and quality.
- Patient feedback was instrumental in guiding modifications to the SLE PtDA.
- The study highlights the value of patient-centered design in developing effective digital health tools for SLE management.