Ex-situ machine perfusion devices for deceased donor liver transplants

7 Patient issues and preferences

The demand for liver transplants exceeds the supply of available donor organs. This shortage leads to significant mortality and morbidity among those on the waiting list.

Waiting for a liver transplant is likely to be a stressful time and can lead to anxiety and depression, both for the person and their family and carers, due to the uncertainty of the situation, physical limitations imposed by the waiting period, potential for declining health, worries about surviving liver transplantation and concerns about potential complications of surgery and ongoing immunosuppressive therapy.

Not all organ retrievals lead to transplants and some surgeries are cancelled due to medical issues, logistical challenges or last-minute clinical decisions. Preparing for and attending transplantation surgeries that ultimately do not proceed can be very distressing for patients and their families. It may also be upsetting for the families of donors when donated organs are not used in transplantation procedures.

Individuals waiting for a liver transplant may face a difficult decision about whether to proceed with a particular donor liver. In children and young people under 18, organ transplantation requires appropriate consent, often in emotional and stressful circumstances. Some organs carry more risk than others, and it is not possible to accurately predict when another suitable donated liver will be matched. Some people may receive more offers for a donated liver than others. Among adults, individuals who have more severe disease, blood group A or are taller than average, generally do not have to wait as long for an offer of a deceased donor liver. As a result, some people may need to consider accepting more risk with their transplant than others.

All people on the waiting list are regularly reviewed to check whether they still meet national criteria for liver transplantation. If the person's condition changes, either improving or becoming too sick to benefit from transplantation, they may be temporarily or permanently removed from the waiting list.

People who receive transplants require lifelong follow-up and ongoing immunosuppressive therapy. For children and young people this will include a structured transition to adult services. Without careful planning and support, this transition can be a vulnerable period, and may be associated with reduced adherence to medication, increasing the risk of graft rejection.

Understanding the transplant process, coping with long-term medication and hospital visits, and managing school and social development may be particularly challenging for children and young people, and their families.