Results Summary and Professional Abstract
Final Research Report
View this project's final research report.
Related PCORI Dissemination and Implementation Project
|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.|
Results of This Project
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.
Improving Discussions on Treatment Options for Lupus Nephritis
Study Principal Investigator Jasvinder Singh, MD, MPH, speaks about the decision aid that 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. His team is now working to expand the decision aid’s use in clinical practice with a PCORI dissemination and implementation award.
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
View the COI disclosure form.
Other Health Services Interventions
Individuals with Rare Disease
Low Health Literacy/Numeracy