To accept or not accept: Patients want a say in liver transplant decisions

A novel study reveals that more than half of liver transplant patients want to be informed of donor risk at the time a liver is offered for transplantation. Nearly 80% of those patients want to be involved in the decision of whether or not to accept the organ according to findings published in Liver Transplantation, a journal of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society.

There is a shortage of available donor organs, which leaves many on the liver transplant waiting list. Currently, there are more than 16,000 patients in need of a liver in the U.S., according to the Organ Procurement and Transplantation Network (OPTN). While the use of extended criteria donors increases available organs, it comes with higher donor-related risks compared to a standard criteria donor. Medical evidence shows discussions with transplant candidates regarding donor-related risk vary from country to country.

"Donor-related risks such as disease transmission and graft failure are weighed against the patient's risk of remaining on the waiting list," explains Dr. Robert Porte from the University Medical Center Groningen in The Netherlands. "While active patient decision making and donor-specific risk have been discussed in the medical literature, our study is the first to report the opinions of liver patients on these issues."

For the present study the team surveyed 40 candidates and 179 patients who received transplants at the University Medical Center between 2000 and 2010. The study group was primarily middle-aged, Dutch men. Between 60% and 75% of the patients wanted to be informed of donor-related risk, with 53% of the group preferring to be informed of these risks at the time of organ offer. Of these patients, 80% wanted to be involved in deciding to accept the organ or not, 11% wished to make the final decision alone and 10% did not want to be involved in the decision-making process.

"Our findings clearly show that the majority of would like to be involved in the decision-making process," concludes Dr. Porte. "Implementing this knowledge and standardizing the content, the manner of transfer and the amount of information we provide to our patients at the different time points along the allocation process will be important to provide the same opportunities and care to every patient on the waiting list."

More information: "Shared Decision Making in Transplantation: How Patients See Their Role in The Decision Process of Accepting a Donor Liver." Sanna op den Dries, Coby Annema, Aad P. van den Berg, Adelita V. Ranchor and Robert J. Porte. Liver Transplantation; (DOI: 10.1002/lt.23921).

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