A paper being presented at the American Society of Nephrology's annual meeting in San Diego, CA says that kidney transplant consent forms are often written at a level that makes it difficult for many kidney patients to fully understand them .
The study findings indicate that consent forms are written on average at a 12th-grade reading level, but to ensure all patients fully comprehend treatment options should be prepared at a 5th - 8th grade reading level. Doing so would enable all patients - regardless of education, race, ethnicity or language background to provide informed consent, which is both legally and ethically required before transplantation.
"We found that kidney transplant consent forms are written at considerably higher reading levels than they should be, and that can make it difficult for patients to make informed decisions about their care," said study author Elisa J. Gordon, PhD, MPH (Northwestern University). "Examining the readability of consent forms ensures that transplant candidates are well informed about transplantation processes, understand the material, and can provide informed consent. If the forms are not written clearly and simply, patients may not fully understand the risks and benefits of transplantation as well as their treatment options as stated on the consent forms."
Dr. Gordon and her colleagues contacted all active kidney transplant centers performing adult transplantation to request copies of their consent forms for kidney transplantation and donation from February - June 2009. Using three measures - Lexile Measure, Flesch-Kincaid Grade Level and Gunning Fox - the researchers found reading levels ranged between 10th grade and college level.
Readability of kidney transplant consent forms is important because of the frequency of end-stage renal disease (ESRD). Nearly 30 million Americans have some evidence chronic kidney disease, which can lead to kidney failure or ESRD, during which kidneys essentially fail and are no longer able to adequately remove waste products from the body. Approximately 485,000 Americans live with kidney failure, a number which is estimated to grow to 785,000 by 2020. Patients with ESRD require dialysis three times a week or a kidney transplant to stay alive. Otherwise, toxins will build up in the body and cause death.
Studies show that one-third of men and women in the U.S. are at the lowest levels of health literacy. An estimated 93 million of the US adult population (43%) possess limited health literacy skills and may have trouble understanding and acting on health materials.
"We know that health literacy issues lead to disparities for other chronic diseases, and evidence suggests that it applies to patients with kidney disease, too. This needs to be taken seriously and promptly addressed," said Dr. Gordon.