Project Summary

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

  • Lupus Foundation of America
  • The Arthritis Foundation
  • The Lupus Initiative
  • American Academy of Family Physicians
  • Steering committee that includes two patients, two patient advocacy leaders, lupus care providers, and clinic representatives

Implementation Strategies

  •  Assess for readiness at sites. 
  • Promote shared decision making. 
  • Adapt the decision aid by including more information about lupus beyond its effect on the kidneys, translating into Spanish, and creating a paper version. 
  •  Adapt the shared decision making approach to work for sites’ existing resources and workflows, including providing different ways for patients to access the decision aid and incorporating it into the patient intake process. 
  •  Adapt the patient portal to send messages that include a link to the decision aid. 
  • Provide educational materials to patients, as part of decision aid. 
  • Train clinic staff to deliver the decision aid. 
  • Provide sites with audit and feedback reports. 
  • Identify and prepare clinic champions at sites. 
  • Provide technical assistance to sites. 
  • Develop an implementation manual that future sites can use to implement the decision aid. 

Evaluation Outcomes

To document implementation:

  • Number of eligible patients using the decision aid
  • Use of implementation strategies at each site
  • Clinic staff perceptions of decision aid acceptability, appropriateness, success, and sustainability (surveys and interviews) 

To assess healthcare and health outcomes:

  • Decisional conflict
  • Patient satisfaction and reported usefulness of the decision aid
  • Patient involvement in decision making (surveys)
  • Patient-physician communication (analysis of audiotaped conversation)
  • Inpatient and urgent care utilization

Project Information

Jasvinder Singh, MD, MPH
University of Alabama at Birmingham
$2,939,953
Implementation of DEcision-Aid for Lupus in Practice Settings for Shared Decision-Making (SDM): IDEAL study^

Key Dates

June 2018
February 2023
2018

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

Tags

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
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Last updated: March 15, 2024