Evaluation of Donor Informed Consent Tool (EDICT)*
We’re going to ask you some questions about living liver donation. We want to understand what
you know about living donation, and how well the transplant team has explained the donation
process. For the following items, please circle whether you think the statement is ‘True’ or
‘False’. If you really cannot make up your mind, circle ‘Unsure’. If you would like more
information, ask your transplant team.
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I could lose my job.
During my evaluation, doctors could find a new health
problem.
The recipient may still have the option to have another living
donor or deceased donor if I do not donate.
The transplant team will give my health information to the
recipient.
My relationships with the recipient and/or family members
may get worse after the donation.
I could get liver failure, which may require a transplant or
cause death.
The recipient could die during surgery.
I will not get any medical benefit from donating.
Doctors know a lot about the long-term effects of donation on
liver donors’ health (beyond 5 years).
The transplant prevents diseases that affect the recipient’s
liver, like hepatitis B and C, or a tumor, from coming back.
About 11 out of 100 donors (11%) get fluid build-up around
the lungs within days of the operation.
1 in 10 donors (10%) need a blood transfusion during surgery.
A bile leak is a complication which occurs in 8 donors out of
100 (8%).
My transplant team could decide at any time that I cannot be a
donor.
For the first few weeks while I get better, I will need someone
to take care of me, stay with me, and drive me places.
My own medical team will always put my health first.
In the future, I may have less ability to get health, disability, or
life insurance because of the donation.
It takes between 3 to 6 months for most donors to get back to
their normal lifestyles.
After donating, I should have routine health exams and lab
tests for 2 years to see how well my liver is doing.
After I recover from my donation, insurance companies may
refuse to pay for future health care and treatment because of
my donation.
My tests might find infectious diseases, such as HIV, that
would be reported to the Department of Public Health.
If I feel pressured to donate, then I should talk to the
transplant team or donor advocate about it.
About 14 out of 100 donors (14%) get a surgical hernia at the
© Elisa Gordon, PhD, MPH 2015
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wound site.
After my liver segment has been removed, the doctors could
find out that they cannot put it into the recipient.
If I decide to not donate, a medical excuse will be given to the
recipient and the recipient’s family.
Up to 1 in 10 patients (10%) who get a blood transfusion get
breathing problems, fever, headache, shock, kidney damage,
or rash.
The donated liver may not function in the recipient.
The recipient and I will share the same medical team.
I will have a scar on my belly.
I may feel depressed, anxious, or emotionally distressed
before, during, or after donating.
If I need a transplant after donating, then I will be given high
priority to get a new liver on the liver transplant waiting list.
Most of the liver grows back within about 6 weeks of the
surgery.
Most fluid buildup cases happen 1 year after donating.
If I am not honest about my medical history, there could be
problems after I donate.
About 13 donors out of 100 (13%) get a minor or severe
infection.
On average, 1 out of 250 donors (<1%) die from donation.
The transplant team will discharge me as soon as medically
possible so I do not get a hospital acquired infection.
Surgeons will remove less than a fifth (20%) of the donor’s
liver for an adult recipient.
My donor advocate will help make sure that my rights are
respected.
A bile leak often gets better on its own, but sometimes needs
surgery.
About 3 donors out of 100 (3%) get temporary nerve damage
in the arm.
A mental health professional will ask about my reasons for
donating.
Surgeons will remove my gall bladder, which will have no
impact on my lifestyle.
I may stop the donation process for any reason, without
penalty.
Pain typically lasts for 3 to 12 weeks.
Most wound site hernias happen 1 year after donating.
Doctors may stop the surgery because my liver segment is no
longer suitable for transplant.
My hospital stay may last longer than expected because of
complications.
Even though my wound is healed, I may still feel tired.
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* Correct answers are in bold font.
© Elisa Gordon, PhD, MPH 2015
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