Results Summary

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Adult patients and parents of children with a type of kidney disease called nephrotic syndrome (NS) have to make many decisions with their doctors about how to treat this long-term illness and how to manage its day-to-day symptoms. Little research evidence is available about how adult patients or parents of children with NS learn about their condition so they can participate in treatment decisions and self-care.

Project Purpose

The research team studied how adult patients and parents of children with NS and the doctors who treat them make decisions about managing NS. Researchers used what they learned to create a website to help people with NS and their doctors communicate and make decisions about treating and managing the symptoms of the condition.

Methods

Researchers held focus groups and individual interviews with 22 people with NS, 25 parents of children with NS, and 35 doctors and nurses who treat NS. The researchers asked what information would help patients and parents make decisions about managing NS. The researchers included doctors and patients from many parts of North America. This geographic diversity helped ensure that the researchers’ website would be useful to people in different places. The researchers used the results of these discussions to come up with a list of things that patients with NS need to know to make decisions about their health.

The researchers used the information they learned in the focus groups and interviews to make a website that could help patients and family caregivers make decisions with their doctors. The researchers then asked NS experts to make sure that the information on the website was correct. The researchers tested the website by sitting with patients, parents of patients, doctors, and nurses as they used the site, to see whether they could use it to help make decisions.

Findings

Patients and parents of patients said they wanted to find information that was relevant to their personal needs. They also said that learning about NS is an ongoing process. The information patients and parents most wanted was what it means to have NS, how to treat NS, and how to manage having NS throughout life.

Patients and parents wanted to receive information in small amounts from sources that they trusted. The researchers also found that people with NS and those who care for them felt distressed when that information was difficult to get.

The researchers found that doctors and nurses who treat NS believe that patients need to understand the condition and its treatments so that they can make good decisions.

The researchers also found that doctors faced several difficulties that made it hard to teach patients about NS, including: (1) doctors did not have much time during appointments; (2) NS is complicated to explain; (3) patients feel a lot of emotions when they learn they have NS, which can distract them from learning; and (4) patients and parents may have untrue beliefs about NS.

Limitations

The researchers interviewed patients, parents, doctors, and nurses who were available and interested in the study. The results of this study might not reflect the views of everyone who lives with or treats NS. In addition, researchers interviewed only people who spoke English. The findings may not be the same for people who do not speak English. Finally, during the interviews, the participants may not have correctly remembered their experiences with NS.

Conclusions

Knowing the challenges that people with NS, parents of children with NS, and clinicians who treat people with NS face helped the researchers create a website that may meet the needs of all three groups. The website may make it easier for doctors and patients to share information and make decisions about treating and managing NS.

Sharing the Results

The researchers gave presentations about the website at meetings about kidney research. The researchers have written several articles to send to journals.

Project Information

Debbie S. Gipson, MD, MS
University of Michigan
$656,315
Development of a Patient Centered Decision Tool for Nephrotic Syndrome Management

Key Dates

June 2012
June 2015
2012
2015

Study Registration Information

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Has Results
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State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022