Kidney Transplant Decision Aid
Introduction
Welcome to the Kidney Transplant Decision Aid. This tool was created with input from patients with kidney disease and the doctors who care for them. It is intended to be used during your visit with your doctor as you learn about kidney transplant. Our goal is to provide informative materials to help you understand your treatment options and outcomes. Your doctor will guide you through the tool and explain the information to help you make informed decisions.
This tool contains information to compare the pros and cons of the following:
- dialysis vs. transplant treatments
- living donor vs. deceased donor transplants
- higher-quality vs. lower-quality deceased donor kidneys
- infectious-risk kidneys
We also created a calculator to estimate a patient’s likely outcomes on the kidney transplant waiting list based on the transplant regions / programs and the individual’s medical condition. Your medical provider will guide you through the calculator. We hope you will find the tool and the likely outcomes helpful in explaining treatment options with your friends and family.
While this aid is designed to help you better understand kidney transplant, many patients with advanced kidney disease are also trying to understand different dialysis options. For more information about dialysis options, see the American Association of Kidney Patients’ (AAKP) dialysis page and the National Kidney Foundation’s (NKF) dialysis topics.
Thank you to all the patients and providers who contributed to help us promote communication and informed decision-making in kidney transplant!
Dialysis vs. Transplant
What are your treatment options for kidney failure?
Dialysis
PROS
- If you are not a candidate for transplant, it will keep you alive
- Cleans your blood
CONS
- Compared to transplant, don't live as long on average
- May have lower quality of life
- Time spent doing dialysis
- Diet restriction
- Catheter or fistula needed
Transplant
PROS
- Better survival rate compared to dialysis if you are a candidate
- Better quality of life
- More time for daily activities
- Fewer diet restrictions
CONS
- Can be hard to find living donors
- Surgery
- Must take medications every day
- Insurance coverage for medications may vary
- Lifelong labs and follow up needed
Living vs. Deceased Donor
What do you need to consider to compare a living donor vs. a deceased donor?
Living Donor
PROS
- Kidney usually lasts longer
- Don't have to wait as long
- Lower risk of dying while on the waiting list
- Risk to donor is lower than you might think
- Planning is easier because surgery is scheduled
CONS
- It can be hard to find and ask potential donors
- Small risk to living donor
Deceased Donor
PROS
- Don't have to ask potential donors
CONS
- Kidney usually doesn't last as long as living donor kidney
- Waiting time may be long and depends on transplant program and region
- Higher risk of dying while on the waiting list
Kidney Quality (KDPI) vs. Infectious-Risk Kidneys
What are high-quality / low-quality deceased donor kidneys and what are infectious-risk kidneys?
Kidney Quality
All deceased donor kidneys considered good enough to transplant are given a score (0-100), called the Kidney Donor Profile Index (KDPI). The score is calculated based on eight factors that help predict how long the kidney will last:
- Age
- Height
- Weight
- History of hypertension
- History of diabetes
- Cause of death
- Serum creatinine value
- Donation after circulatory death (DCD) status
A HIGHER score means LOWER quality. A kidney with a score higher than 85 is often referred to as a "high-KDPI kidney."
Infectious-Risk Kidneys
Some kidneys are from donors with risk factors present for acute transmission of HIV, hepatitis B, or hepatitis C as defined by the 2020 US Public Health Service Guideline criteria. Although they have risk factors, the donors have tested negative for these infections, therefore the risk is very low. This category is different from the quality, or KDPI, as these kidneys are likely to be high quality.
For example, the family of a 22-year-old man who died of a drug overdose is donating his kidney. His blood tests for infections such as HIV and hepatitis B and C are negative. The kidney has a low KDPI (is high quality) because he is young, he had no other medical problems, and the kidney function was good. However, he was known to have died from a drug overdose, so there is a small (1 in 1 million) risk that he was exposed to HIV or hepatitis in the last few days and the blood tests are not yet able to detect this. Therefore, his donor kidneys would be classified as "infectious risk" (compared to not having these infectious risk factors) but also as high quality, or "low KDPI."
Deceased Donor Kidney Quality
What do you need to consider when choosing whether to accept a high-KDPI kidney?
Willing to Accept a High-KDPI Kidney
PROS
- Shorter waiting time because of access to more donors
- Higher survival rate compared to dialysis for many patients
CONS
- Kidney may not last as long because of lower quality
Not Willing to Accept a High-KDPI Kidney
PROS
- Kidney that is not high KDPI generally lasts longer because of higher quality
CONS
- Longer waiting time because of access to smaller pool of donors
- Potentially lower survival rate due to longer waiting time on the waiting list
Infectious-Risk Kidneys
What do you need to consider when choosing whether to accept a deceased donor kidney with infectious risk factors present (for acute transmission of HIV, hepatitis B, or hepatitis C)?
Kidneys With Infectious Risk Factors
PROS
- Potentially shorter waiting time because of access to more donors
- Higher survival rate compared to dialysis for many patients
- Risk factors present does not mean lower quality
- Infection(s), if transmitted, can often be treated and cured
CONS
- Very small risk of getting infected (1 in 1 million)
Kidneys Without Infectious Risk Factors
PROS
- Lower risk of getting an infection
CONS
- Potentially longer waiting time due to access to fewer donors
- Unknown donor risk factors for infection may still exist
- May lose access to high-quality (low-KDPI) kidneys
Questions for Your Doctor
What should you find out?
Treatment Related
- What is the difference between the transplant regions?
- What should I look for when choosing a transplant program?
- Can I get listed at more than one transplant program?
- Can I stay with my local nephrologist?
- What medical testing do I need to undergo to see if I am a transplant candidate?
- Who pays for the living donor medical expenses?
- What emotional support do I need?
Donor Questions
- What is the difference between the transplant regions?
- How do I go about finding a living donor?
- What if I have a potential donor who does not match my blood type?
- Should I consider a high-KDPI kidney?
- Should I consider a kidney from a deceased donor with infectious risk factors present for HIV, hepatitis B, or hepatitis C?
- How can I communicate transplant information to my friends and family?
Calculate Your Risks
What are your likely outcomes on the kidney transplant waiting list?
Predictions based on adult first-time kidney transplant candidates on the waitlist between January 2024 and December 2024