Final Research Report

View this project's final research report.

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Informing Patients with a Rare Disease About Their Treatment Options
Around half of all patients with the autoimmune disease lupus develop kidney disease. Because lupus is more common and more severe in minority patients, this PCORI-funded study developed a decision aid to help African-American and Hispanic patients with lupus kidney disease make informed decisions about treatments.

Journal Citations

Article Highlight: Lupus, an illness in which the immune system attacks parts of the body, can cause a kidney disease called lupus nephritis, a swelling of the kidneys. Treatment with immune system-blocking medicines can be effective, but patients must weigh potential benefits and risks with their personal preferences. Researchers in this study developed and tested a decision aid to help these patients. As they report in PLOS Medicine, compared with those who received a standard informational pamphlet, women who used the decision aid felt more confident about their treatment choices.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, Singh made changes including

  • Adding more description of the laptop-based intervention tool
  • Providing support for the statement that the tool was culturally sensitive
  • Revising statements so that the results that were not statistically significant were interpreted accurately
  • Providing more detail on why men were excluded, whether incident cases were included, and on the network meta-analysis, in order to better adhere to the PCORI Methodology Standards

Conflict of Interest Disclosures

Project Information

Jasvinder Singh, MBBS, MPH
University of Alabama at Birmingham
Individualized Patient Decision Making for Treatment Choices among Minorities with Lupus

Key Dates

September 2013
April 2018

Study Registration Information


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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
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
Intervention Strategy Intervention Strategies PCORI funds comparative clinical effectiveness research (CER) studies that compare two or more options or approaches to health care, or that compare different ways of delivering or receiving care. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022