Knowing 'System' Paves Way for Transplant

Knowing 'System' Paves Way for Transplant
By Ed Susman, Contributing Writer, MedPage Today
Published: April 03, 2013
Reviewed by F. Perry Wilson, MD, MSCE; Instructor of Medicine, Perelman School of Medicine at the University of Pennsylvania and Dorothy Caputo, MA, BSN, RN, Nurse Planner

Action Points
Note that this study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
This observational study demonstrated higher health literacy scores among patients listed for or who had received a kidney transplant.
Given the timing of measurement of health literacy, the effect of the transplant process itself on health literacy can not be evaluated.

ORLANDO – Patients in desperate need of a kidney transplant are more likely to get on the organ transplant list if they are better versed in the intricacies of the healthcare system and their disease, researchers suggested here at the National Kidney Foundation spring meetings.

Patients who were listed for transplant scored an average 60.6 on the REALM-T (Rapid Estimate of Adult Health Literacy-Transplant) while those who were not listed for transplant earned an average 48.69 (P<0.05), said Abby Swanson Kazley, PhD, associate professor of Health Care Leadership and Management at Medical University of South Carolina in Charleston.

In her poster presentation, Kazley said that patients with higher scores on other tests of health literacy also were more likely to get on the transplantation list:

Those who made the waiting list scored a mean of 5.3 on the New Vital Sign Assessment (NVS) compared with 3.95 for those not listed (P<0.05)
Those who were listed scored 15.98 on the Decision-making Capacity Tool (DMCAT) for those listed compared with 11.69 for those not listed. Each of these is statistically significant (P<0.05)
Kazley and colleagues followed 92 patients, comparing their health literacy scorecards. Of the group, 53 were eventually placed on the transplant list and 36 of those patients actually underwent a kidney transplant, underscoring the importance of making the list, Kazley told MedPage Today in a telephone interview.

"Physicians need to realize that patients have varying levels of health literacy, and it can impact the care they receive," she said. "Doctors should provide information about patients' conditions in a number of different forms in ways patients can understand."

In transplantation, especially, the ability to handle the complexity of the procedure and the process requires more than basic abilities, she said.

"There is a long process that these patients have to go through before they can be listed for a transplant," Kazley said. "There are a lot of hurdles they have to go through. It is a complex system. There are a number of tests these patients have to go through. There are biological tests, psychological tests, social tests and things of that nature.

"You may have patients that don't understand exactly what the appointments are for and they are probably thinking 'why do I keep coming back?' They may not even have the ability to understand why a transplant is different than the treatment they are getting now."

Kazley said her study revealed that if patients "don't have a certain level of health literacy they are not able to navigate that complex system that would make them eligible to be listed. Those with lower health literacy are not able to fulfill all the requirements."

Health literacy has been defined as "the degree to which individuals have the capacity to obtain, process, and understand the basic health information and services needed to make appropriate decisions" by the Institute of Medicine, Kazley explained.

Individuals with type 2 diabetes would have even more complexities to deal with in finding their way through the process, Kazley said.

Her study did not specifically address the impact of diabetes, but she noted that diabetes is a contributing factor in many end stage renal disease patients.

Kerry Willis, PhD, senior vice president for scientific activities of the National Kidney Foundation, said "Patients must know how to advocate for themselves and make appropriate decisions about their care. This study shows that education impacts medical outcomes and so we will continue to develop new and appropriate resources for transplant candidates."

In a press release, Willis said the National Kidney Foundation has education materials available to help guide patients through the transplantation wilderness.

http://www.medpagetoday.com/MeetingCoverage/NKF/38222