PCORI implementation projects promote the use of findings from PCORI-funded studies in real-world healthcare and other settings. These projects build toward broad use of evidence to inform healthcare decisions.
This PCORI-funded implementation project is helping to make a decision aid, shown to help patients with lupus nephritis choose a treatment that is right for them, part of routine care at lupus clinics across the United States.
|Lupus is a rare condition in which the immune system attacks parts of the body. Lupus can cause lupus nephritis, which is swelling of the kidneys. Immune-blocking medicines can effectively treat lupus nephritis, but each of the medicines work differently. It can be hard for patients to choose which medicine to use.|
What is the goal of this implementation project?
A number of immune-blocking medicines can treat lupus and lupus nephritis. But these medicines differ in how well they work, their side effects, and how much they cost. A PCORI-funded research study found that an online decision aid helped women with lupus nephritis decide whether to start or change a lupus medicine based on what is most important to them. Women who used the decision aid felt less doubt about their medicine choices than women who read an educational pamphlet.
This project is expanding the use of the decision aid to lupus clinics across the country to support patients with lupus in their treatment decisions.
What will this project do?
The project team is working with 15 lupus clinics to make the decision aid part of routine patient care.
First, the project team is updating the decision aid to include more information about lupus beyond its effect on the kidneys. They are also translating the decision aid into Spanish and creating a paper version.
Then, at each clinic, the project team is:
- Training doctors and staff in use of the decision aid.
- Working with champions at each clinic who are promoting use of the decision aid among clinicians and their patients.
- Working with clinics to put reminders, feedback reports, and other supports in place to make use of the decision aid a regular part of care.
- Working with sites to create flexible ways for patients to access the decision aid. For example, sites may arrange for patients to access the decision aid online at home through their patient portal or on a tablet in the waiting room. Sites may also choose to offer a paper version of the decision aid.
As the project team learns what works at each clinic, the team will compile a manual of best practices for using the decision aid in clinical settings.
What is the expected impact of this project?
The project is demonstrating what’s required to make the decision aid part of patient care in different types of lupus clinics across the United States. At least 500 adult patients will use the decision aid across the 15 clinics. The project evaluation will confirm that the decision aid is working as intended to help patients decide on lupus treatment.
More about this implementation project:
Stakeholders Involved in This Project
To document implementation:
To assess healthcare and health outcomes:
Patients with lupus may have a higher risk of serious complications from COVID-19. Many health systems have shifted from in-person care to telehealth to reduce the COVID-19 virus spread.
Telehealth provides care to patients remotely using phone, video, or monitoring devices that can help manage care.
With the enhancement, the project team will support the use of the lupus decision aid in telehealth visits. The team will develop new ways to view the decision aid, such as a smartphone app or website. They will also work with clinics to
- Have patients view the decision aid at home
- Alert the clinic when the patient completes the decision aid
Enhancement Award Amount: $499,942
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Study Registration Information
Initial PCORI-Funded Research Study
This implementation project focuses on putting findings into practice from this completed PCORI-funded research study: 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 was previously titled: Implementing an Individualized Lupus Nephritis Patient Decision-Aid for Immunosuppressive Drugs