Liver transplant patients want to be involved in decision making

In the first study to reveal what liver transplant candidates think about being involved in the decision to accept or reject a donor organ, researchers suggest more than half wish to be informed of donor risk when a donor liver is offered. They also say nearly 80% of these patients wish to be involved in the decision of whether to accept the organ or not.

Researchers at University Medical Center Groningen in the Netherlands, write about their study of Dutch liver transplant candidates and recipient patients in the journal Liver Transplantation.

The study revealed that almost 80% of liver transplant patients wish to be involved in the decision of whether to accept a donor organ or not.

There is a shortage of donor livers, which means across the world there are many patients waiting to receive a transplant.

In the US, for example, the Organ Procurement and Transplantation Network (OPTN) estimates there are currently over 16,000 patients waiting for a new liver.

In a bid to increase availability of organs, some countries like the US have relaxed the rules for accepting donor organs a little. 

This means older donors or donors whose health status would previously have made them ineligible are now included under the "extended criteria."

The authors say this results in a slightly greater possibility of higher donor-related risks, such as disease transmission and graft failure.

Also, they note that medical evidence suggests discussions with transplant candidates about donor-related risks vary from country to country, but commonly, recipient patients play an inactive role in the decision making.

For the study, the team recruited 40 patients who were on the waiting list to receive a liver transplant and 179 who had undergone the procedure at the University Medical Center between 2000 and 2010.

The participants were primarily middle-aged, Dutch men. All patients filled in the survey questionnaires anonymously.

Most patients wish to be informed of risks at time offer is made

When they analyzed the responses, the team found up to three-quarters of patients wished to be informed about donor-related risks and more than half wanted this to be done at the time the organ offer is made.

Also, of the patients wishing to be informed, 79.8% said they wished to be involved in the decision of whether to accept or reject the offered donor liver, 10.6% said they wished to make the decision entirely themselves, and 9.6% expressed a wish not to be involved in decision making at all.

The research team says the findings "clearly show that the majority of transplant candidates would like to be involved in the decision-making process," and that:

"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 transplant allocation process will be important to provide the same opportunities and care to every patient on the waiting list."

Meanwhile, researchers investigating ways to improve transplant outcomes concluded, among other things, that the perceived risk of organ donors transmitting cancer to their recipients is likely to have been overestimated.