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Bilingual Site Boosts Awareness of Kidney Donations For Hispanics/Latinos

New site aims to increase knowledge and dispel misconceptions about living kidney donation

  • Infórmate.org uses Spanish soap operas, games and interactive modules 
  • Site significantly increases knowledge of living kidney donation and transplantation  
  • Hispanics/Latinos are more likely to get kidney disease but less likely to get living donor transplants

CHICAGO --- A new bilingual website sensitive to Hispanic/Latino cultural needs increased those individuals’ knowledge about living kidney donation and transplantation beyond education provided by transplant hospitals, reports a new study from Northwestern Medicine and the National Kidney Foundation of Illinois.

Informate.org was launched to help Hispanics/Latinos with kidney failure and their families learn about the options, risks and benefits of living and deceased donor kidney transplants and make informed decisions about what is best for them.  The website was developed to address the apparent lack of information about living kidney donation among Hispanics/Latinos.

“Many Hispanics do not pursue living donation because they don’t know it’s a possibility,” said lead author Elisa Gordon, associate professor of surgery at Northwestern University Feinberg School of Medicine. “We created Infórmate.org to help Hispanic/Latino patients and their families learn what their options are.”

The site also debunks any misinformation people might have and explains that living donors can have children, exercise, work and have a normal sex life after donating a kidney.

The study was published Oct. 7 in the journal Transplantation.

Nationally, Hispanics/Latinos are 1.5 times more likely than non-Hispanics to get end-stage kidney disease. But disproportionately fewer Hispanics/Latinos receive a living donor kidney transplant than non-Hispanic whites. Patients who get a living donor kidney typically live longer than patients who get a kidney transplant from a deceased donor. 

The website significantly increased study participants’ knowledge about living kidney donation and transplantation. Informate.org can be used as a complement to the education provided by transplant centers, Gordon said.

The website was tested among 282 adults with kidney failure and their family members receiving transplant education at two transplant centers: Northwestern Memorial Hospital in Chicago and University of California, Davis, Medical Center in Sacramento.

Informate.org includes video clips, interactive modules, games, fact sheets, photographs and two telenovelas (Spanish-language soap operas). Informate.org aims to be neutral in describing the risks and benefits of living and deceased donation, the steps to pursuing a deceased or living donor transplant, the financial programs to support living donors, policies on transplantation of immigrants, and cultural beliefs and myths about transplantation and donation.

“Although living kidney donation has risks, most living kidney donors recover well from the surgery without long-term problems,” said co-author Dr. Juan Carlos Caicedo, associate professor of surgery at Feinberg and director of the Hispanic transplant program at Northwestern Memorial Hospital.

“We want the Hispanic/Latino population to know dialysis is not the only option when it comes to treating kidney failure,” said Anne Black, CEO of the National Kidney Foundation of Illinois. “Our hope is Infórmate.org will empower individuals to explore their options and take control of their health.”

Funding for the study was provided by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation grant R39OT22059 and by the Eleanor Wood Prince grant. The contents of this publication/presentation are solely the responsibility of the author(s) and do not necessarily represent the views of HRSA/DoT.

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