Plain language summaries of research

Key terms

Kidney transplant failure: when a transplanted kidney stops working well enough, and the person needs to have other treatment.

Dialysis: a treatment that filters waste and excess fluid from the blood when kidneys can no longer do this. It can be done at hospital or at home.

Why do kidney transplants fail?

A kidney transplant is a surgical procedure where a healthy kidney from a donor is placed into someone whose own kidneys no longer work properly. For many people with kidney failure, this offers a much better quality of life than dialysis.

However, kidney transplants do not last forever. Around one in five transplants from living donors, and up to one in four (25%) transplants from deceased donors stop working within 10 years. This can cause serious health problems, such as a higher risk of dying and a reduced quality of life. When a transplant stops working, it can be difficult for the patient, their families, and those caring for them to navigate. Important decisions need to be made about future treatment options in a time of great uncertainty.

Despite how common kidney transplant failure is, and how serious it can be, there has been very little research about what the experience is like for those going through it.

About the research

Researchers wanted to investigate the experiences of people living with kidney transplant failure, their families and friends, and the health care professionals caring for them. To do so, they interviewed 41 people from three different hospitals in the UK.

In the study:

• 15 people were living with a failing kidney transplant, or had a failed transplant in the past year
• 9 people were family and friends of people in the first group
• 17 people were healthcare professionals

They were all asked about their personal experience of living with, or managing, a failing kidney transplant.

The experience of waiting

The researchers found three main themes when taking to people about the time after finding out the transplant was going to fail.

Living under constant threat

Many of the people interviewed felt they were living under a constant threat of transplant failure. Patients were mostly worried about losing the freedom that their transplant had provided them, or having to go back on dialysis. Family and friends were worried about their loved one dying, while healthcare professionals described the experience as a mix of dread and inevitability .

Feeling unprepared

Even though most people knew on some level that the transplanted kidney would not last forever, many did not feel ready when it happened. Patients felt that transplant failure happened more quickly than when their own kidneys stopped working, which gave them less time to prepare. Healthcare professionals were also aware that people are often told about transplant failure too late.

Being in a difficult in-between state

Patients and families described being in a kind of no-man's land between the time of finding out the transplant is failing and the time of starting new treatment. Healthcare professionals recognised this experience but did not always offer practical or psychological support at the time.

Conversations about failing transplants

The researchers found three main themes about conversations around failing transplants

Navigating uncertainty

Patients, families, and healthcare professionals all mentioned uncertainty as a major part of the experience. Patients often wanted to know exactly when the transplant would fail, why it was failing, and how it would happen. However, healthcare professionals were often unable able to answer these questions. Some healthcare professionals felt it was more important to be honest about their uncertainty than to offer no guidance at all.

Responsibility and control

Many patients wondered if they had done something to cause their kidney transplant to stop working, and some changed their diet and lifestyle because they felt responsible. Healthcare professionals recognised that many patients feel this way, but explained that transplant failure has many causes that could be out of their control.

How well a transplant works is affected by many things, however the researchers noticed that healthcare professionals would congratulate patients for keeping their transplant going for a long time. This could be adding to patients' sense of responsibility for their transplant, particularly when it starts to fail.

The elephant in the room

Many of the people interviewed said it was difficult to talk openly about transplant failure. Healthcare professionals found these conversations hard because they didn't want to take away the patient's hope, or make them feel they had personally failed at keeping their transplant working. However, patients and families said they wanted clear, honest, and straightforward conversations rather than information being softened or avoided.

The focus on the failing transplant

The researchers found two main themes when talking about people's focus around the failing transplant.

Trying to keep the transplant going

When a transplant starts to fail, healthcare professionals said their focus is on keeping the transplant working for as long as possible. Patients and families also shared this goal, wanting to avoid dialysis for as long as possible. However, the researchers found that this sometimes stopped people from preparing for their next step, such as securing access for dialysis, being listed for another transplant, or making plans for the future.

One patient said they were not referred for information about dialysis or re-listed for another transplant as quickly as they could have been. Instead, their kidney function continued to drop.

The ripple effect on families

Family members described fear and anxiety about their loved one dying. They often felt like bystanders, as they were present with their loved one but not included in appointments and conversations. Healthcare professionals were aware that family members are also affected by these difficult times, but their needs are often not fully met.

What do these findings mean?

Based on their findings, the researchers made the following recommendations for healthcare professionals:

• Use clear language: patients want to hear information directly and honestly
• Be open about what is known and what is not: acknowledge that some things are uncertain, like when the transplant will stop working and how.
• Acknowledge the impact: recognise that transplant failure is a difficult time physically, emotionally, and practically.
• Plan ahead: while trying to keep the transplant working for as long as possible, start preparing for next steps in treatment
• Involve families: encourage patients to bring family members to appointments and be actively involved in the conversation
• Explain what causes transplant failure: help patients to understand that many things can affect how long a transplant lasts

 

Limitations of the study

All of the family members and friends interviewed were women, so male experiences were not represented.

The study only explored the experiences of adults, not children.

Each healthcare profession only had a small number of people representing them.

The study took place at three hospitals in the UK, so may not reflect other countries and systems.

This plain language summary is based solely on the findings of the published research article listed below. It has been written to help patients, carers, families and members of the public understand the research. If you have questions about kidney transplantation or your own health, please speak to your healthcare team.

Read the full article

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The original article

This is a summary of: Venter B, Noyes J, Selman LE, Exley C, Griffin S, Hancock A, McLaughlin L, Hole B, and Bailey PK (2026). Experiences and Management of People with a Failing Kidney Transplant: Findings From the IN-FAKT Study. American Journal of Kidney Diseases 87(6):775-787.

This authors have also used the findings to create an information booklet on kidney transplant failure, which is available free from Kidney Care UK. Find the booklet here.

The author of the research has approved this summary.