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Donor Outcomes in the Years After Living Donor Liver Transplantation

Two recent studies of people who donated part of their livers to others in need of a liver transplant have highlighted some of the ways in which this altruistic act can affect donors psychologically, socially, and financially in the first few years after the procedure. Living donor liver transplantation is the only treatment option available for those with end-stage liver disease who are unable to obtain an organ from the limited supply provided by deceased donors. Health care professionals aim to optimize this treatment so that it can continue to be offered as a life-saving therapy that best supports the health of both recipients and donors.

The NIDDK’s Adult-to-Adult Liver Transplantation Cohort Study 2 (A2ALL-2) consortium conducted two studies at its nine centers in the United States and Canada to investigate potential burdens placed on donors, including those affecting their mental health, relationships, and finances. As part of these studies, 271 donors participated in phone surveys performed before donation and at 3, 6, 12, and 24 months after donation. They were asked about relationship changes, financial burdens, and mental well-being. They found that most donors’ relationships with their family members or spouses/partners stayed the same or even improved, with nearly a third of survey respondents reporting better relationships than before the transplant. However, the majority of donors reported out-of-pocket medical or non-medical expenses related to the transplant, which 44 percent of donors considered burdensome. This financial burden was heaviest in the first few months after the transplant procedure and persisted for 1 to 2 years after. Lower income donors were at greater risk of incurring these burdensome costs. These findings support the need for programs to expand resources for donors, in order to reduce the financial burden and eliminate these disincentives to being a donor. A second study focused on mental well-being by evaluating donors for symptoms of conditions such as depression, anxiety, and alcohol abuse. The donors reported well-being comparable to or better than the general population, with low rates of depression, alcohol abuse, or anxiety. Asked 2 years after their donation, nearly 95 percent of donors said they would donate again if they could. However, 5 to 10 percent of donors reported some type of impairment in mental well-being sometime during the 2 years following donation. The researchers identified factors that affect donors’ well-being and their perceptions of self-worth and personal growth after donation. For example, some donors whose recipients passed away experienced guilt and feelings of responsibility. These results suggest that donors should be monitored post-donation to identify any individuals at risk for developing impaired mental well-being, so that they can receive proper care.

These studies provide a more complete picture of how living donor liver transplantation affects donors in a myriad of ways, adding to information from previous studies of donors’ physical health. This knowledge can help to identify programs and systems needed to offer additional support to donors and their families, as well as to fully inform them ahead of time so they know what to expect from the donation and recovery experience. Further research will be needed to assess longer-term impacts on the donors, since some effects may not be apparent until many years after the procedure.

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