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
- dialysis vs. transplant treatments
- living donor vs. deceased donor transplants
- higher quality vs. lower quality deceased donor kidneys
- increased 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 Arbor Research Collaborative for Health's Choosing Dialysis website .
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
- Wait 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 / 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 10 factors that help predict how long the kidney will last, the factors are:
- Age
- Height
- Weight
- Ethnicity
- History of Hypertension
- History of Diabetes
- Cause of Death
- Serum Creatinine
- Hepatitis C Virus (HCV) Status (applies only to HCV positive donors)
- 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 donated from people considered at "increased risk" for infectious diseases such as HIV and Hepatitis B and C. 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 (high quality) because he is young, has 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 (4 in 1000) 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 "increased infectious risk" (compared to standard donors) but 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 wait 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 generally lasts longer because of higher quality
CONS
- Longer wait time because of access to smaller pool of donors
- Potentially lower survival rate due to longer wait time on the waiting list
Increased Infectious Risk Kidneys
What do you need to consider when choosing whether to accept an increased infectious risk deceased donor kidney?
Increased Infectious Risk Kidneys
PROS
- Potentially shorter wait time because of access to more donors
- Higher survival rate compared to dialysis for many patients
- Increased risk does not mean lower quality
- Infections can often be treated and cured
CONS
- Very small risk of getting infected [4 in 1000 or half the chance of dying in a car accident]
Standard Infectious Risk Kidneys
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 an increased infectious risk kidney?
- 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 September 2020 and August 2021