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 the Northwestern University Feinberg School of Medicine Programs in Public Health 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 Dr. Elisa Gordon, associate professor of surgery at Northwestern and faculty member in the Center for Healthcare Studies-Institute for Public Health and 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.
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, Dr. Gordon said.
Funding for the study was provided by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Division of Transplantation, and by the Eleanor Wood Prince grant.