PCORI implementation projects promote the use of findings from PCORI-funded studies. The initiative on Implementation of Effective Shared Decision Making Approaches in Practice Settings funds projects like this one to promote the use of shared decision making strategies tested in PCORI-funded studies or incorporating evidence from PCORI-funded research, to support patients in making informed decisions about their care.
This project focuses on implementing findings from the completed PCORI-funded research project: A Personalized Decision Aid to Help Women with Lupus Nephritis from Racially and Ethnically Diverse Backgrounds Make Decisions about Taking Immune-Blocking Medicines.
This project is in progress.
What were the results from the original PCORI-funded research study?
Lupus is an illness in which the immune system attacks parts of the body. Lupus can cause lupus nephritis, or swelling of the kidneys. In the original research study, women with lupus nephritis looked at either a pamphlet about lupus or an online decision aid, tailored to women’s personal situations, before deciding whether to start or change treatment with immune-blocking medicine. Compared with women who read the pamphlet, women who used the decision aid felt less doubt about their medicine choices. This was true for African-American and white women who used the decision aid, although not for Hispanic women.
Why is this research finding important?
Many types of immune-blocking medicines may be used to treat lupus and lupus nephritis. The medicines differ in how well they work, their side effects, and how much they cost. The decision aid may help patients feel more confident about which medicine is right for them.
What is the goal of this project?
The project team is working to make the decision aid available at more clinics and to patients who have lupus that affects other parts of the body.
What is the project team doing?
The project team is updating the decision aid to include broader information about lupus beyond its effect on the kidneys. They are working to integrate the decision aid as part of patient care in 15 lupus clinics over 27 months. At each clinic, doctors and staff receive training specific to each clinic’s needs to help change the way they approach care for patients with lupus.
How is the team evaluating this project?
The team is tracking how patients’ decision-making process changes after clinics begin using the decision aid. The team is asking patients how they feel about their treatment choice and the process of choosing the treatment. In addition, the team is tracking how often patients and doctors use the decision aid and looking at how they discuss making a treatment choice.
Through medical records, the team is tracking patients’ health care, such as emergency room visits. The team is also evaluating how clinics can make the decision aid part of patient care, including attitudes toward using the decision aid. They are comparing how the decision aid works in large and small clinics and in private and university clinics.
How is the team involving patients and others in making sure the findings reach people who can use them?
Patients, including members of the Lupus Foundation of America and the Arthritis Foundation, are providing input on this project. As the team learns what works at each clinic using the decision aid, they are compiling a manual that other clinics can use when making the decision aid part of care for people with lupus.
Learn more about PCORI’s Dissemination and Implementation program here.
Related PCORI-funded Research Project
Note: Results from the original project have completed PCORI’s Peer Review and are available here.
Improving Discussions on Treatment Options for Lupus Nephritis
Study Principal Investigator Jasvinder Singh, MD, MPH, speaks about his original research project and the decision aid he developed to help African-American and Hispanic patients have quality discussions with their clinicians regarding treatment options for lupus nephritis, a rare disease that affects young women.
^This project was previously titled: Implementing an Individualized Lupus Nephritis Patient Decision-Aid for Immunosuppressive Drugs