April 13, 2016 – Education, insurance status, and knowledge of the transplantation process appear to shape patient preferences about liver transplants.
Education and information are key to overcoming persistent barriers to liver transplantation, according to a recent study by DCRI investigators.
Approximately 600,000 Americans suffer from liver cirrhosis, and for many of these people a liver transplant is their best chance of surviving. Yet only a small fraction of patients with end-stage liver disease are waitlisted for a liver transplant. Previous studies have demonstrated that geographic location, insurance, income status, gender, and race can all play a role in determining whether a patient receives a liver transplant.
How patient preferences interact with each of these factors is not well understood. In this study, published recently in the journal Liver Transplantation, the DCRI’s Julius Wilder, MD, PhD, (pictured) and colleagues conducted a survey of 109 liver patients (72 non-listed; 37 listed) to assess demographics, health care system distrust, religiosity, and factors influencing liver and organ donation.
The majority of both listed and non-listed patients were male, and non-listed patients were significantly older than listed patients (58 years versus 53 years). Most patients in each group were white, but patients in the non-listed group were more likely to be black (29 percent versus 16.2 percent). Listed patients were more likely to have an undergraduate degree or higher (8.6 percent versus 26.4 percent) and were more likely to have private insurance (70.3 percent versus 44.4 percent). Both groups had comparable yearly household incomes, transportation methods, and travel distances to receive clinical care.
The researchers hypothesized that patient distrust in the healthcare system would affect patient preferences for transplant, yet they found no difference in the mean healthcare distrust between listed and non-listed patients or between whites and blacks. The results, they concluded, suggest that distrust in the health system did not contribute to differences in patient preference or access to liver transplant in the study population. Similarly, they found no significant difference in religiosity between groups or by race.
Patients were also asked about their knowledge of the liver transplant process. Non-listed patients (25.4 percent) were more likely to report not having discussed transplantation with their physician, and less likely to report being referred to a transplant center (47.2 percent versus 97.3 percent). Non-listed patients were less likely to obtain as much information about transplantation as desired (65.3 percent versus 94.6 percent), understand the process of distribution of liver organs on the waiting list (47.9 percent versus 83.8 percent), and comprehend the requirements for listing for liver transplant (41.7 percent versus 75.7 percent). Both groups were equally likely to want a liver transplant if their liver disease was going to shorten their lives and their physician recommended the procedure.
The researchers also asked patients about their opinions of organ donation. Most non-listed and listed patients reported being very likely or likely to donate organs upon their death (51.3 percent versus 59.4 percent). Black patients were less likely than white patients to become an organ donor in the future (55.5 percent versus. 31.5 percent), but more likely to become an organ donor if approached by someone of the same cultural or ethnic background (44.4 percent versus 15.8 percent).
Many of the barriers to transplantation and organ donation identified in this study could be addressed by further education, the researchers concluded.
In addition to Wilder, the study’s authors included Omobonike O. Oloruntoba, Andrew J. Muir, and Cynthia A. Moylan.