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Organ Donation in India

Each year, hundreds of people die while waiting for an organ transplant. There is a
shortage of organs, and the gap between the number of organs donated and the number
of people waiting for a transplant is getting larger. Transplants, as an option, have
successful outcomes, and the number of people needing a transplant is expected to rise
steeply due to an ageing population and an increase in organ failure.
Organ Donation in India

In India, a large number of people die due to road traffic accidents. However, only a
small number of people that die due to these circumstances are able to donate their
organs. As organs need to be transplanted as soon as possible following the donors
death, they can only be donated by someone who has died in the hospital. Usually,
organs come from people who are certified as dead while on a ventilator in a hospital
intensive care unit, which can be as a result of a hemorrhage, major accident like a car
crash or stroke.

Key Reasons for Shortage of Organ


donors in India
Ignorance and Lack of Knowledge about Organ Donation

There is a major lack of awareness about organ donation in India, and recent polls and
surveys reveal that people would come forth with their wish to donate if they had
received more information.

Registering Ones Wish to Donate

A major reason for the shortage of organs is that many people have not recorded their
wish about organ donation or discussed it with their families.

Myths and Beliefs

Myths and misconceptions about organ donation discourage potential donors from
making the decision to donate organs or tissue after death.

How does Organ Donation Work


Transplants post brain death must be done very soon after death to ensure the organs
remain suitable for transplantation, and the person who has died is not deprived of the
opportunity to donate. However, organ donation itself will not take place unless you,
in your lifetime, expressed a wish to donate, or the person closest to you in life gives
their permission.

Donation after Brain Death

Once the patient is admitted, all efforts are made to stabilize the patient. If those
efforts fail, the patient is pronounced brain-dead, but only after the doctors
evaluation, testing and documentation.

Consent from the family is obtained to proceed with the donation, and the organ
procurement organization is informed. Consent from coroner/legal authorities is
obtained.

In the mean time, the organ donor is maintained on ventilator, and stabilized with
fluids and medications. He/she also undergoes numerous laboratory tests.

Recipients are also identified for placement of organs. A surgical team is mobilized
and coordinated to arrive at the hospital for removal of organs and tissues.

The donor is brought to the operating room. Multiple organ recovery is performed
with organs being preserved through special solutions and cold packing. The
ventilator support is then discontinued.

The donors body is surgically closed and released.

Why Should You Discuss this with Your Family


The most important thing is that after you have made your decision about whether to
become an organ donor and register that decision you must discuss your wishes
with your family. Organ and tissue donation cannot proceed without the consent of the
family.

Discuss this Topic


It is important that your family, partner and friends understand your
reasons for pledging your organs. It is important for people to make an
informed decision, so you may like to share the facts around organ and
tissue donation included on this website. You may also like to share some
of the stories about donors and recipients.

Having the Discussion

A good start is to use everyday situations to start a discussion on important


life issues, including what to do with your organs and tissues when you
die. There would be situations and opportunities to bring this topic up such
as making a will, getting your life insurance, leaving home for the first
time as an adult, celebrating an anniversary with your partner, getting a
checkup at your doctor, seeing a traumatic event in the news or after a
friend or a family member dies.

What do I need to do
Almost anyone can donate organs and tissues there is no age limit on the donation of
some organs and tissues. The determining factors are where and how a person dies,
and the conditions of their organs and tissues. While your age and medical history will
be considered, you shouldnt assume youre too young, too old or not healthy enough
to become a donor.

These are the 3 Most Important Things You Need to Do


1
Register Your Decision
Record your decision on the register and ensure that your decision will be
known.

2
Inform and Discuss with Your Family and Dear Ones
Help your family and friends understand and remember your decision

Always Carry Your Donor Card


Always carry an Organ Donor Card in your wallet. It is important for your family to
be aware of your wishes, as WITHOUT their consent, your organs/tissues cannot be
donated.

Some Common Myths & Frequently Asked Question About Organ Donation
Answered.
Myth 1: I am too old to be a donor
Fact : In the case of cornea and some other tissue, age does not matter. For other
organs, it is the persons physical condition, not age, which is the deciding factor.
Specialist health care professionals decide in each case which organs and tissue are
suitable. Organs and tissue from people in their 70s and 80s are transplanted
successfully.
Myth 2: I cannot be a donor because I have an existing medical condition
Fact : Having a medical condition does not necessarily prevent a person from
becoming an organ or tissue donor. The decision about whether some or all organs or
tissue are suitable for transplant is made by a healthcare professional, taking into
account your medical history.
Myth 3: My organs might not go to those who have waited the longest or are the
neediest
Fact : The rich and famous are not given priority when it comes to allocating organs. It
may seem that way because of the amount of publicity generated when celebrities
receive a transplant, but they are treated no differently from anyone else. In fact, what
really counts is the severity of illness, time spent waiting, blood type and other
important medical information. The organ allocation system is blind to wealth or
social status. Factors such as race, gender, age, income, celebrity status are never
considered when determining organ recipients.
Myth 4: If I donate my organs it will cause delays to my funeral arrangements
Fact : Yes, there is a possibility. However, given the altruistic nature of this donation,
families usually accept this and take it as part of the process of donation.
Myth 5: Organ donation will leave my body disfigured
Fact : Organs are always removed with the greatest of care and respect for the person.
This takes place in a normal operation theater under sterile conditions by a team of
specialized doctors. Afterwards, the surgical incision is carefully closed and covered
by a dressing in the normal way. The operation is carried out by specialist health care
professionals who always ensure that the donor is treated with the utmost respect and
dignity.
Myth 6: My family will not get to see my body after donation
Fact : Families are given the opportunity to spend time with their loved ones after the
operation, if they wish. Arrangements for viewing the body after donation are the
same as after any death.
Myth 7: If I am declared brain dead, I might still have some chances of coming back
to life
Fact : No. Brain death is an irreversible condition that results from a severe brain
injury or hemorrhage which causes all the brain activity to stop. When an individual is
declared brain dead, a ventilator keeps the body supplied with oxygen, which enables
the heart to continue to beat and circulate blood. Once the ventilator is turned off, the
heart will stop beating within a few minutes.
Myth 8: My decision to be an organ donor will affect my medical care
Fact : No. It is the duty of a doctor to look after a patient and make every possible
effort to save the patients life. This is their first duty. If, despite their efforts, the
patient dies, organ and tissue donation can then be considered, but it would be
implemented only after the family of the patient gives consent.
Myth 9: My religion does not support the idea of organ donation
Fact : None of the major religions in India object to organ donation and
transplantation. If you have any doubts, you should discuss them with your spiritual or
religious adviser.
Myth 10: It is enough if I have a donor card
Fact : No. Just having a donor card is not enough. You need to carry it at all times and
also inform your relatives about your wishes so that they honour your wish at the
moment of truth.
Myth 11: Once I become an organ donor I can never change my mind
ORGAN DONATION- MYTHS AND FACTS

Dr. S. Sudheendran MS, FRCS (Eng) (Glas) (Gen)


Transplant Surgeon, AIMS, Cochin

Imagine that one of your loved one has been involved in an accident and is in
desperate need of rare group blood. Imagine you know someone who has the same
type of blood. But when the doctor approaches the person for blood donation, he or
she refuses to donate it and your loved one dies due to lack of blood. This scenario
is virtually unthinkable today, because blood donation has become a familiar yet
sublime form of charity. Nonetheless, there was a time not so long ago, when
procuring blood to save life was very difficult task indeed. Thankfully, we have
come a long way since then. Now hold that thought for a moment! By the time you
finish reading this article three people in Kerala who are alive right now would be
dead due to organ failure (liver, heart, kidney or lung failure)!
Not because they do not have the money for treating their illness. Not because they
could not reach the hospital in time. Not because of lack of facilities in Kerala. But
simply because there was nobody to donate an organ in time! Many organs were
burnt or buried during this time, unaware that these organs could have saved
countless lives. So, scarcity of donors is not the issue here. The problem is these
potential donors die without leaving instructions that they are prepared to help
someone live after them. Is it not high time that we changed this scenario as well,
just as we did to blood donation? Would you not take the chance to save someones
life, without danger to your own life? The knowledgeable among you are aware of
organ donation. If you always wanted to donate, but have not done anything about
it, act in time to pledge your organs or At least inform your close relatives about
your intention. However, if youve delayed your decision to be an organ donor,
because of a belief youve never fully delved into, here are answers to some
widespread organ transplants myths.

Myth: Organ transplantation is still in the experimental phase of surgery and is


possible only in the highly developed western countries?
Fact: Organ transplantation involves surgery to remove a diseased organ and
replace it with a healthy one. The person who donates the organ is called a donor
and the patient who receives it is a recipient. Transplantation has become one of
the most remarkable success stories in the history of medical science. Almost every
organ, except the brain, can now be transplanted with very high success rates. It is
no more experimental, but an accepted method of treatment of organ failure all
over the world. There are many centers in India and Kerala which have
successfully performed transplant operations.

Myth: Organ donation is not necessary in India?


Fact: Unofficial statistics from India indicate that there are nearly 300 deaths every
day due to failure of organ. That is more than one lac deaths per year. Of the 9.5
million deaths in India every year, at least one lac are believed to be potential
donors; however less than 100 actually become donors. The remaining nearly
99,900 are lost. At an average of five organs per donor that could have been
transplanted, almost 5 lac organs are burnt or buried. Organ donation after death is
one simple act that does not hurt anyone. There are many people who could use
our organs after death. Let us live and then give.

Myth: Apart from being an altruistic act, me or my family have nothing to gain
from organ donation?
Fact: That, as a matter of fact, is not true. From the existing data, the glaring reality
remains that during our life span, each one of us has more chance of requiring an
organ transplant than being a donor! So in case you ever have the misfortune of
being afflicted with an organ failure your life then would depend on an organ
donor. Thus, in simple terms the more organ donors there are, the more your
chance are! To clarify this in a more pragmatic circumstances, imagine that the
Kerala Government made the following announcement tomorrow : Because of the
severe shortage of transplantable organs, beginning July 1, 2006, we will not make
any organ available to any person who is not registered as an organ donor. Lots of
people would rush to register as organ donors. People would rush to register their
children as organ donors. Wouldnt you?

Myth: Only eyes can be donated after death?


Fact: Tissues like eyes, skin, cartilage and bone which do not require blood supply
can be donated after death. Other organs such as liver, heart, lung and kidney can
also be donated but after brain death. When someone is brain dead, it means
there is no blood supply or oxygen to their brain and that their brain is no longer
functioning in any capacity and never will again. It does not mean that other organs
such as liver, heart and kidney are also dead, because they may function for just a
few more hours. These organs may be used to save another individual through
transplant, whilst they are still workable. But time is of the essence here, since all
these organs will die within a short time period. When making a decision to donate
organs you may be saving the lives of 8-10 others.

Myth: Brain death is not easy to recognize?


Fact: It is true that patients who are brain dead do not look dead. Their hearts are
beating, they look normal, and they even sweat. One of the reasons, why it is hard
to convince relatives to donate organs after brain death, is because they see their
loved ones heart still beating (on the ECG monitor) and cannot accept that they
are dead. The fact is that the heart beats with the assistance from extensive life
support machines and medicines. The criteria for brain death have been accepted
all over the world since 1968 and it has been legalised in India since 1994. Brain
death is indicated if eight criteria are fulfilled, notable ones being:
They cannot breathe without the assistance of a ventilator. Within minutes of
stopping the ventilator, heart will stop beating.
They have no response to pain
Their pupils do not react to light
Basic brain reflexes do not work
In India the rules for brain death declaration are the most stringent in the world.
Four different physicians will independently perform eight sets of tests to confirm
brain death. Donation after brain death is called cadaveric donation or deceased
donor donation.

Myth: Brain death means coma?


Fact : Brain death and coma are completely different. Coma patients are not brain
dead at all. If we perform the above mentioned eight tests of brain death, they will
all be negative. Patients in coma are therefore alive as you and me and will not be
considered for organ donation at all. On the other hand brain death means death.
There are no ifs and buts about brain death. The brain stem death are absolute and
infallible.

Myth: I have heard of stories where people who have been declared brain dead
have later come back to life. Fact: There has never been any case, anywhere in the
world, where someone who has been declared brain dead, later came back to life.
The stories you hear are about patients who are in coma. As explained above, coma
and brain death are worlds away from each other.

Myth: I have always understood that when an individual dies, the heart stops
beating. Since my loved ones heart is beating, he is still alive.
Fact : The heart has its own pacemaker independent of the brain. As long as it has
oxygen, it continues to beat. The heart could actually be removed from the body,
placed in a saline solution, given oxygen, and still continue to beat for a few
minutes! This is like a lizards tail, which can continue to wriggle even after it is cut
off. But remember, this is only for a short time. Eventually, the heart will stop,
despite being on maximum life support machines.

Myth : Stopping the ventilator on my loved one, who is brain dead, amounts to
killing.
Fact : No,. absolutely not. Once someone is declared brain dead that person is
dead. No force in this world can save them. On the other hand, they can save many
other lives.
Myth : My religion discourages organ donation:
Fact : There are 22 major religions in the world, none of which discourages organ
donation. Being a very noble act by which one human can provide life to another
most religions support organ donation.

Myth : If I register as a donor it will affect the quality of medical care I receive at
the hospital.
Fact : No, most certainly not. Every effort will be made to save your life. Organ
donation will be considered only after brain death. In fact, all the curers would
make extra effort for someone who is as gifting as you are. Blood and organ donors
are respected much more in hospitals, should they fall ill.

Myth : The hospital can make me brain dead and sell my organs.
Fact : This is one of the most cold-blooded and ruthless myths about organ
donation that has virtually slaughtered the humanitarian and selfless nature of
organ donation. There are many reasons why this is impossible:
1. Certification of brain death requires two series of eight tests by four independent
doctors, one of whom has no attachment to the hospital whatsoever and chosen
from the panel of doctors recruited by the government.
2. For transplantation of organs, they have to be in very good state. If the organs
have to be in very good condition, the donor has to be kept in a pristine form. For
this, the finest treatment is a necessity, just like a living person.
3. Producing brain death deliberately by design is virtually impossible.

Myth : I am rich. I suffer from organ failure. I can legally buy organs from
someone else.
Fact : Any commercial dealings of organs ( buying , selling, or any form of
coercion to donate organs) are illegal all over the world. In India this offence is
punishable by imprisonment up to 7 years. The doctor who is involved in this
would be struck off the medical register. Unfortunately, it is this illegal trafficking,
that has brought such dark and unpleasant label to organ donation and
transplantation in India.

Myth : Once I register as a donor, the doctors have the authority to retrieve my
organs in the eventuality of my being brain dead.
Fact : No, the organs can be retrieved only after getting the unequivocal consent of
the relatives. It is, therefore, crucial to talk to your family about organ donation. If
we were ever in a situation in which we were declared brain dead and our family
was approached about organ donation, how would you want them to respond? By
having that discussion before a crisis develops, our wishes and desires can be
known and followed. Ultimately, at the decisive point, it is your family that makes
the choice, not you. So make it easy for them. Organ donation is not about death,
but rather life. In a perfect India, every patient, in need of an organ should receive
one. This dream can become a reality only if every one of us becomes an organ
donor. If you value life, if you value others lives, organ donation is moral and
social obligation. It does not matter who you are, how rich or poor you are, or
which religion you belong to, you have the power to give the greatest gift in the
world, LIFE, PASS IT ON.

LIVE LIFE, THEN GIVE LIFE

Give my sight to the man who has never seen a sunrise, a babys face or love in the
eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of
pain.
Give by blood to the teenager who was pulled from the wreckage of his car, so that
he might live to see his grand children play.
Give my kidney to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fibre and nerve in my body and find a way to
make a crippled child walk.
Explore every corner of my brain. Take my cells, if necessary, and let them grow
so that, someday a speechless boy will shout at the crack of a bat and a deaf girl
will hear the sound of rain against her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weaknesses and all prejudice
against my fellowmen.

....Robert N Test....
Deceased Organ Donation in India

Dr. Sumana Navin, Dr. Sunil Shroff & Ms. Sujatha Niranjan

Introduction

Organ donation from deceased donors is gaining momentum in India and it is time to
take this programme further to help thousands of patients with organ failure get a
second chance at life.

The Transplantation of Human Organs Act, 1994 heralded a significant change in the
organ donation and transplantation scene in India. Many of the states of India adopted
the Act over the next few years, but there was hardly any focused work done towards
furthering the deceased organ donation programme. In a few states, likeminded
medical professionals and philanthropists came together to take the initiative forward.
Tamil Nadu and Andhra Pradesh were at the forefront in this with some hospitals and
non-governmental organizations like MOHAN Foundation taking the lead in setting
up an organ sharing network, the Indian Network for Organ Sharing (INOS) in the
year 2000. As a result, the retrieval of 1033 organs and tissues were facilitated in these
two states by MOHAN Foundation (Table 1).

Tamil Nadu paves the way

In 2008, the Government of Tamil Nadu through a pioneering effort put together
government orders laying down systems and procedures for deceased organ donation
and transplantation in the state. In this way, the Cadaver Transplant Programme (CTP)
came into being. The government orders also came at a time when the public was
becoming more aware about organ donation. The organ sharing registry developed by
MOHAN Foundation for INOS was adopted by the state government to start the Tamil
Nadu Network for Organ Sharing (www.tnos.org). The Tamil Nadu model has been
possible due to the coming together of both government and private hospitals, NGOs
and the State Health department. With an organ donation rate of 1.9 per million
population in 2014, Tamil Nadu is now the leader in deceased organ donation in the
country. Recently, another government order was passed for the formation of a new
regulatory body called Transplant Authority of Tamil Nadu (TRANSTAN). It was
registered in March 2015 and will coordinate the entire range of transplant activities
including live transplants. The CTP, Regional Organ and Tissue Transplant
Organisation (ROTTO) and State Organ and Tissue Transplant Organisation (SOTTO)
will all come under its umbrella of activities. ROTTO and SOTTO come under the
purview of the National Organ and Tissue Transplant Organization (NOTTO).

National Organ and Tissue Transplant Organization [1]

National Organ and Tissue Transplant Organization (NOTTO) is a national level


organisation set up under Directorate General of Health Services, Ministry of Health
and Family Welfare, Government of India located at 4th and 5th Floor of Institute of
Pathology (ICMR) Building in Safdarjung Hospital New Delhi. It has two divisions:

o National Human Organ and Tissue Removal and Storage Network

o National Biomaterial Centre

National Human Organ and Tissue Removal and Storage Network

This has been mandated as per the Transplantation of Human Organs (Amendment)
Act 2011. The network will be established initially for Delhi and gradually expanded
to include other States and Regions of the country. Thus, this division of the NOTTO
is the nodal networking agency for Delhi and shall network for Procurement
Allocation and Distribution of Organs and Tissues in Delhi.

Function/Activities

National Network division of NOTTO would function as apex centre for all India
activities of coordination and networking for procurement and distribution of Organs
and Tissues and registry of Organs and Tissues Donation and Transplantation in the
country.
National Biomaterial Centre (National Tissue Bank)

The Transplantation of Human Organs (Amendment) Act 2011 has included the
component of tissue donation and registration of tissue Banks. It becomes imperative
under the changed circumstances to establish National level Tissue Bank to fulfill the
demands of tissue transplantation including activities for procurement, storage and
fulfil distribution of biomaterials.

The main thrust & objective of establishing the centre is to fill up the gap between
Demand and Supply as well as Quality Assurance in the availability of various
tissues.

Organ donation in other States

It is heartening to see that many other states are following Tamil Nadu with robust
deceased organ donation and transplantation programmes (Fig.1). Andhra Pradesh has
the Jeevandan programme (www.jeevandan.gov.in), Karnataka has the Zonal
Coordination Committee of Karnataka for Transplantation (www.zcck.in), and
Maharashtra has the Zonal Transplant Coordination Center in Mumbai
(www.ztccmumbai.org) and Nagpur. Gujarat has also been working consistently in
this area. MOHAN Foundation has been spearheading efforts in Delhi-NCR and
Chandigarh and the results are encouraging. The Kerala government set up
Mrithasanjeevani and the Kerala Network for Organ Sharing (www.knos.org.in) in
2012 and the programme has been moving forward in leaps and bounds. The most
recent initiative in this field has been taken by the Government of Rajasthan with the
setting up of the Rajasthan Network for Organ Sharing (www.rnos.org) in December
2014. There have been five deceased donors in the state till 30th July 2015. As a result
12 solid organs (liver, kidney) and two heart valves have been retrieved. Working
closely with the Rajasthan government is MFJCF (MOHAN Foundation in
collaboration with Jaipur Citizen Forum). As in Tamil Nadu, in many of the states the
deceased organ donation programme involves public-private-NGO partnerships.
Deceased Organ Donation in India Year wise & State wise

A total of 530 organs were retrieved from 196 multi-organ donors in 2012
resulting in a national organ donation rate of 0.16 per million population (Table
2).

Table 2 - Deceased Organ Donation in India - 2012


Source: Indian Transplant News Letter (Vol. 12 Issue No. 37)

A total of 852 organs were retrieved from 388 multi-organ donors in 2013
resulting in a national organ donation rate of 0.26 per million population (Table
3).

Table 3 - Deceased Organ Donation in India - 2013


*ODR Organ Donation Rate (per million population)

**0.26 National Organ Donation Rate

Source: Indian Transplant Newsletter (Vol. 13 Issue No. 40)

A total of 1150 organs were retrieved from 411 multi-organ donors in 2014
resulting in a national organ donation rate of 0.34 per million population (Table
4).

Table 4 - Deceased Organ Donation in India - 2014


*ODR Organ Donation Rate (per million population)

**0.34 National Organ Donation Rate

Source: Indian Transplant Newsletter (Vol. 14 Issue No. 43)

Current Status of Deceased Organ Donation in India [2]

In the last two years we have seen doubling of the deceased organ donation rate from
196 donors in 2012 or 0.16 per million population (pmp) to 411 in 2014 or 0.34 pmp
(Table 5 & Fig. 2). The figures may not look impressive enough, but when you
consider that these figures are of only 10 states and union territories (UTs) of India
and the donations resulted in 1150 solid organs like kidney, liver, heart, lung, pancreas
and intestine being retrieved, it does become significant (Fig. 3). Rather than looking
at the national average, it may be better to look at the state wise figures and many
states have crossed 1 or 2 donations per million population. It also means that
deceased donation transplantation is now responsible for almost 40% of the liver
transplants done in the country and over 15% of kidney transplants.
The states that have led the way forward include Tamil Nadu, Kerala, Andhra Pradesh,
Maharashtra, Karnataka, Gujarat, Uttar Pradesh, Puducherry, Delhi-NCR and
Chandigarh. Tamil Nadu leads the table in 2014 with an organ donation rate of 1.9
pmp closely followed by Kerala at 1.7 pmp (Table 6).
The factors that have been responsible for this increase in the numbers are as follows -

1. Support of the media in promoting the cause

2. Increase in number of hospitals/centres doing transplantation especially liver

3. Increase in number of trained transplant coordinators in the programme

4. State Governments proactive role in the programme in some of the states

5. Cooperation between public and private hospitals in the states that have done well

6. Specialist Intensive care doctors who have been supportive of the programme

7. Awareness among the public and their support towards the programme

8. Role of NGOs like MOHAN Foundation in helping with capacity building and
creating awareness among the public and in hospitals.

Tamil Nadu has continued to contribute substantially to the number of deceased


donors and is the only state where the second tier cities like Coimbatore, Madurai,
Trichy, Vellore, Salem and Tirunelveli have had deceased donors. This speaks highly
not only about the programme, but also the availability of advanced medical facility in
the state.

The MOHAN Foundation Experience

Over the past 18 years, MOHAN Foundation has facilitated the retrieval of around
5100 organs and tissues. During this time, we have encountered some interesting
misconceptions about the programme -

1. People are generally unwilling to donate the organ(s) of a brain dead relative.

This is a huge misconception in our country that people are unwilling to donate. In
India, every day we have almost 60 families donating the eyes of their loved ones.
Also, periodically many whole body donations are taking place to the Anatomy
department for research.

We have seen that when a trained counsellor talks to the relatives of a brain dead
patient and explains the situation, almost 65% will agree to donate. This is the figure
in many states of the country be it Tamil Nadu, Andhra Pradesh, Maharashtra, Gujarat,
Kerala or Delhi.

Studies conducted both in corporate hospitals and government hospitals show the
figures to be similar. Also, there has been no correlation between people giving
consent and their economic class or level of literacy. If they are counselled, explained
about the irreversibility of brain death, and given time to decide, many will say yes to
donation.

The problem is not that people do not want to donate. The real problem is that there
are no mechanisms in our hospitals to identify and certify brain death. Also, often, no
one informs the relatives of a brain dead person that they have the option to save lives
by donating the organs of their loved one.

2. There are not many patients who are diagnosed with brain death.

This is not true.

While there are no actual figures available, guesstimates are that it is close to 100,000
a year and that at any given time every major city has 8 to 10 brain deaths in various
ICUs of the city.

But what we do know is that 4 - 6 % of all hospital deaths in any major hospital are
due to brain death. In India, Road Traffic Accidents (RTAs) amount to approximately
1,40,000 deaths a year out of which almost 67% sustain severe head injury resulting in
brain death (as per a study conducted by AIIMS, Delhi). This means that there are
almost 93,000 persons who become brain dead, and are therefore potential organ
donors.

Moving ahead

The way ahead is to develop infrastructure in government hospitals, to conduct


Continuing Medical Education (CME) programmes on organ donation and
transplantation for medical and paramedical personnel, and to train
counsellors/transplant coordinators. It is also important to formulate national
guidelines (Standard Operating Procedures) on brain death certification, donor
optimization and how to tackle medico-legal cases that constitute the bulk of
donations in India. And finally, building positive public will about organ donation is
paramount and the role of the media is crucial in this.

References:

1. www.notto.nic.in

2. Indian Transplant Newsletter (Vol. 14, Issue No. 44)

About Organ Donation

What is organ donation?


Organ donation is the harvesting of an individual's organs after he or she dies for the
purpose of transplanting them into another person. The person who gives the organs is
called a donor while a person who receives the organ is called a recipient.

Who can be donor?


All of us can be organ donors, irrespective of age, caste, religion, community, current
or past medical condition. Children can also be organ donors after taking consent for
organ donation from their parents.

However active cancer, active HIV, active infection (for example, sepsis) or
Intravenous (IV) drug use are some of the contra-indications. Patients who have
Hepatitis C may still donate organs to a patient who also has Hepatitis C. The same is
true for Hepatitis B but this happens in very rare cases. Most cancer patients may
donate corneas.

Which organs and tissues can be donated?


Vital Organs like heart, liver, kidneys, intestines, lungs, and pancreas can be donated
only in case of 'brain death'. However other tissues like corneas, heart valves, skin,
bones etc can be donated only in case of natural death.

How does Organ Donation help patients with organ failure?


For organ recipients, a transplant often means a second chance at life. Vital organs
such as the heart, pancreas, liver, kidneys and lungs can be transplanted to those
whose organs are failing. It allows many recipients to return to a normal lifestyle. For
others, a cornea or tissue transplant means the ability to see again or the recovery of
mobility and freedom from pain.

What is the importance of a donor registry?


A registry is an essential part of understanding who and where potential donors are. A
registry gives a planner enough information to devise strategies to get more public
cooperation and commitment towards organ donation. Having a registry in place
allows doctors and transplant coordinators to check if a brain dead person wished to
donate and then approaching the family for consent becomes easier. It helps in saving
crucial time in the process of organ donation. At present, we do not have a central
registry in India. Through this initiative we intend to make the government of India
create one.

How does organ donation help families of deceased donors to cope with their
loss?
The act of organ donation has the ability to comfort grieving families. It is always
difficult to lose a loved one. Many grieving families of organ donors draw comfort
from the fact that their loss may help to save or improve the lives of others. Studies
carried out to understand how a family's wounds heal have shown that the support
from family members helps a person to overcome grief. The support of friends and
religious and cultural beliefs also help donor families. Most of the donor families
agreed to donate organs because they felt that it was the only positive outcome from
their loss.

Why Donate?

Each year, thousands of people die while waiting for a transplant, because no suitable
donor can be found for them. The need for organ donors has never been greater.

Did you know In India every year nearly:


500,000 people die because of non-availability of organs 200,000 people die of
liver disease
50,000 people die from heart disease 150,000 people await a kidney transplant but
only 5,000 get one 1,000,000 lakh people suffer from corneal blindness and await
transplant

Nationally, with a population of 1.2 billion people, the statistic stands at 0.08 persons
as organ donors per million population (PMP). This is an incredibly small and
insignificant number compared to the statistics around the world.

Countries like the USA, UK, Germany, Netherlands have a 'family consent' system for
donations where people sign up as donors, and their family's consent is required.
(These countries have seen the donations double Per Million Population averaging
between 10-30 PMP). Other countries like Singapore, Belgium, Spain have a more
aggressive approach of 'presumed consent', which permits organ donation by default
unless the donor has explicitly opposed it during his lifetime. These countries have
seen the rate of donations double, averaging between 20-40 PMP.

We understand it is difficult to think about organ donation when you have just lost a
loved one; however organ donation is a generous and worthwhile decision that can
save many lives. By donating, each person can save the lives of upto 7 individuals by
way of organ donation and enhance the lives of over 50 people by way of tissue
donation.

How to donate
To be an organ donor, it is important to register by signing up for Organ Donation.
Please visit the website of one of our NGO Partners mentioned below to register.

1. Mohan Foundation: http://mohanfoundation.org/


2. Shatayu: http://shatayu.org.in/

3. Gift Your organ: http://giftyourorgan.org/

4. Gift a Life: http://giftalife.org//

For any queries regarding organ donation, please call - 1800 4193737 (Toll free by
MOHAN
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Review

Open Access

Organ and tissue donation in clinical settings: a systematic review of the impact of
interventions aimed at health professionals

Frdric Douville1Email author,

Gaston Godin2 and

Lydi-Anne Vzina-Im2

Transplantation Research20143:8
DOI: 10.1186/2047-1440-3-8

Douville et al.; licensee BioMed Central Ltd. 2014

Received: 10 June 2013

Accepted: 25 February 2014

Published: 14 March 2014

Abstract

In countries where presumed consent for organ donation does not apply, health
professionals (HP) are key players for identifying donors and obtaining their consent.
This systematic review was designed to verify the efficacy of interventions aimed at
HPs to promote organ and tissue donation in clinical settings. CINAHL (1982 to
2012), COCHRANE LIBRARY, EMBASE (1974 to 2012), MEDLINE (1966 to
2012), PsycINFO (1960 to 2012), and ProQuest Dissertations and Theses were
searched for papers published in French or English until September 2012. Studies
were considered if they met the following criteria: aimed at improving HPs practices
regarding the donation process or at increasing donation rates; HPs working in clinical
settings; and interventions with a control group or pre-post assessments. Intervention
behavioral change techniques were analyzed using a validated taxonomy. A risk ratio
was computed for each study having a control group. A total of 15 studies were
identified, of which only 5 had a control group. Interventions were either educational,
organizational or a combination of both, and had a weak theoretical basis. The most
common behavior change technique was providing instruction. Two sets of
interventions showed a significant risk ratio. However, most studies did not report the
information needed to compute their efficacy. Therefore, interventions aimed at
improving the donation process or at increasing donation rates should be based on
sound theoretical frameworks. They would benefit from more rigorous evaluation
methods to ensure good knowledge translation and appropriate organizational
decisions to improve professional practices.

Keywords

tissue and organ procurement health professional program development professional


education hospital

Review

Background

The number of patients awaiting organ or tissue transplantation continues to grow


throughout the world [1, 2, 3, 4]. The shortage of organ and tissue donors is widely
studied and several factors explaining why individuals accept or refuse to consent to
organ and tissue donation are reported in the literature [5]. Simpkin et al. [6]
conducted a review of modifiable factors that influence relatives decisions to allow
organ donation. This review suggests that the skills of individuals making the request
to donate may have a significant impact on consent rates. Based on this information,
evaluating the efficacy of interventions among HPs to increase donation seems
relevant.

The donation process depends on potential donor identification and on HPs


approaching families for donation consent. Since HPs are responsible for this
approach to families, they are the gatekeepers for organ and tissue donor notification.

Consent to organ and tissue donation is the end point resulting from many actions
undertaken by HPs (from identifying potential donors to referring donors to an organ
and tissue procurement representative). In fact, many of these actions can be viewed
as professional practices and as forms of human behavior. Thus, interventions should
take advantage of behavioral theories and behavior change strategies in their design
[7, 8, 9, 10, 11]. Past studies have demonstrated the importance of developing theory-
based interventions in order to enhance their potential success in changing behavior
[12, 13]. The absence of theoretical bases for interventions and the selection of
appropriate behavioral change techniques are two of the main problems in behavior
change research projects [14, 15, 16, 17]. Grimshaw et al. [15] suggest exploring the
applicability of behavioral theories to the understanding of behavior change among
HPs.

Several systematic reviews on organ donation have been published. These systematic
reviews have cover different aspects of organ donation including the factors
influencing families consent to donation [6], the attitude of the public towards living
donors [18], the educational interventions offered in high schools [19], the
management of donor brain death [20] and professionals attitude regarding the heart-
beating donors [21]. However, there is no systematic review on the efficacy of
interventions among HPs to encourage them to approach families for consent or
increasing donation rates. This is an important aspect of organ donation because donor
identification and obtaining the consent of family are necessary conditions to the
donation process.

This systematic review was designed to identify and analyze the impact of
interventions aimed at HPs to improve donation-promoting professional practices in
clinical settings. Secondary outcomes consisted of verifying whether such
interventions were effective in improving donation rates and exploring associated
behavior change strategies and the underlying theoretical framework.
Methods

Search strategy

The most relevant electronic databases covering the field of behavior change among
HPs are those in health and psychology. CINAHL (19822012), COCHRANE
LIBRARY (Cochrane Reviews, Other Reviews, Trials, Methods Studies, Technology
Assessments, Economic Evaluations, Cochrane Groups), EMBASE (19742012),
MEDLINE (19662012), PsycINFO (19602012), and ProQuest Dissertations and
Theses were searched for papers published in French or English until September 2012.

The search strategy included the following concepts: 1) health professionals; 2) organ
and tissue donation; and 3) interventions or strategies. This search strategy was
adapted according to the terminology of the various databases. Moreover,
bibliographies of potential studies were analyzed manually to find other key words
relevant to the search strategy and studies not identified with the main search strategy.
Only French and English papers were considered for review for practical reasons. The
complete search strategy for each database is presented in Additional file 1.

Study eligibility criteria

To be eligible for inclusion, studies had to adopt an experimental or quasi-


experimental design reporting interventions aimed at HPs in clinical settings in order
to improve their practices regarding the donation process or to increase the donation
rates. They also had to report behavioral measures of the donation process or impact
on organ and tissue donation rates as the study outcome.

In this study, HPs refer to professionals with medical training whose jobs require them
to be in contact with patients and who are in a position to ask for donor consent. The
concept of HP includes family physicians, specialist physicians, nurses or any other
allied HPs who meet families in their daily practice. It also includes physicians in
training (residents or interns), but excludes healthcare students and administrators not
in contact with patients.

Also, the interventions had to be offered to HPs with the intention of modifying their
practice regarding the donation process or at increasing donation rates. Such
interventions could take the form of educational (for example, flyers, workshop, or
lecture) [22, 23], organizational (for example, hospital personnel structure change, or
guidelines) [24], or regulatory strategies. These interventions or strategies were
retained insofar as they were aimed at HPs caring for patients.

From a methodological point of view, the studies had to include a control group.
However, to ensure that the study would not overlook relevant interventions that
might have been effective, intervention studies without a control group, but with a pre-
post analysis, were considered in a separate analysis.

Finally, to be included in the review, the intervention outcome had to be reported as a


behavioral measure of the donation process (objective or self-reported), based on
Kirkpatricks third level of program evaluation [25], or as the impact on organ and
tissue donation rates. Behavioral measures could be a specific action (behavior) in the
donation process, such as identifying a potential donor, approaching families to
initiate discussion, obtaining signed consent for a donation or referring a potential
donor to an organ and tissue donor representative. Articles reporting the impact on
organ and tissue donation rates were considered even if the study did not assess
behavioral outcomes to ensure comprehensiveness of the interventions reported in this
review.

Studies that did not include HPs were excluded, as were those not directly aimed at
changing HPs behavior, such as the implementation of an Organ Procurement
Organization (OPO) coordinator in a hospital. Although one of the OPOs duties
involves identifying potential donors and approaching families to initiate donation
discussion, their implementation could not be considered as an intervention intended
for HPs (nurses and physicians) to modify their practices regarding the donation
process; the latter would still have to notify the OPO and procurement organizations
of potential organ and tissue donors.

Finally, studies concerning HPs reactions following an intervention or their level of


knowledge following the intervention [25] were not considered if the assessed
outcomes did not include the HPs behavior or donation rate.

Sorting of the studies by their titles and abstracts was first carried out by FD in order
to select the articles meeting the inclusion criteria. Thereafter, the full text articles that
met the inclusion criteria were screened independently by FD and LAVI, and decisions
were compared.

Study quality assessment

Quality assessment of the studies was performed using criteria inspired by Morrison
[26] and Reed [27], who recommend questions for appraising reports of medical
education interventions.

Three criteria were selected to assess the population (randomized sample; justification
of sample size and existence of a control group). Two criteria evaluated the
intervention (allocation concealment and theory underlying the intervention). Two
criteria appraised the assessment tool (validity and reliability). Finally, two criteria
assessed the statistical approach used (intention-to-treat) and the level of attrition at
follow-up.

No assessment for the risk of bias across studies was performed because the
interventions had different objectives, populations and outcomes, making it impossible
to obtain cumulative evidence.

Data extraction

A first coding was carried out on one study to verify if there was agreement on the
extraction of data and to confirm the quality of the coding sheet. In case of
disagreement between the two reviewers, the final decision was taken after discussion
with a third reviewer (GG).

The following data were extracted from the selected studies: authors, year of
publication, population under study and sample size. The study data were extracted
according to the recommendations for evaluating educational interventions [26, 27].
Thus, the reported variables were: objective of the study; intervention type
(educational or organizational) and strategy; duration of follow-up; behavior change
techniques; and study methodology, outcomes and results. The theory underlying each
intervention was also extracted.

To help classify HPs strategies and relate those to the most recognized and effective
theory-based strategies, behavior change techniques were analyzed using the
taxonomy developed by Abraham and Michie as reference [11]. This taxonomy
contains 26 behavior change techniques used in interventions based on behavior
change theories such as the theory of reasoned action [28], the theory of planned
behavior [29], the social cognitive theory [30], the information-motivation-behavioral
skills models [31] and other behavior change theories.

Data analyses

Based on the studies retained, a descriptive analysis of selected studies (study


objective; intervention type (educational or organizational) and strategy adopted;
duration of the follow-up; behavior change techniques used; and study methodology,
outcomes and results) was completed prior to identifying effective interventions.
Interventions with a control group and interventions with a pre-post analysis are
described separately.

A risk ratio was calculated for each outcome among the studies with a control group.
The risk ratio was determined based on the number of participants in each group
(experimental and control) and on the frequency of HPs behavior adoption. Thus, the
analysis allowed the identification of significant differences between the two groups
following the implementation of an intervention.
Results

Review statistics

A total of 15 studies assessing interventions among HPs in clinical settings aimed at


improving professional practices regarding the donation process or increasing
donation rates were identified. The results of the search strategy are presented in
Figure 1. All studies included used educational, organizational or a combination of
both types of interventions to promote professional practices regarding the donation
process. These took the form of in-service meetings, workshops, conferences, print
documents, examples provided of situations associated with the organ and tissue
donation process and identification of donation criteria or information on how to
approach a potential donor [23, 32, 33].
Figure 1

Flow chart diagram.

Study quality assessment

The 15 studies were assessed regarding population and the intervention assessment
tool. In general, study quality was low. No study used a randomized population or
justified their sample size. Only five studies used a control group. Allocation
concealment of the intervention was neither relevant nor mentioned for all the studies
included, and 14 of the 15 studies did not use a theory-based intervention. Where
relevant, the validity and reliability of the assessment tools were not mentioned.
Among the studies with a control group, there was no intention-to-treat analysis.
Finally, the attrition rate was appropriately mentioned when required. The results of
the quality assessment for the studies of the present review are available in Table 1.

Table 1

Summary of quality assessment for the studies included

Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

Alons
o,
Ferna Not
ndez, No menti No N/A None N/A N/A N/A N/A
Matai oned
x et al.
(1999)

Beasle No No No N/A None N/A N/A N/A N/A


y,
Capos
sela,
Brigh
am,
Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

Gunde
rson
and
Gortm
aker
(1997)

Bleakl
ey No No No N/A None N/A N/A N/A N/A
(2010)

Yes 40%
(but attrit
no ion;
Dettle, statist
Sagel ical Not Not
Not
and comp ment ment No
No No menti None no
Chrysl ariso ione ione anal
oned
er n d d ysis
(1994) betwe of
en drop
group outs
s)

Kittur,
Not
McMe
rando
namin
No No Yes mly None N/A N/A N/A N/A
and
assign
Knott
ed
(1990)
Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

Yes
(but
no
statist
Not
ical
rando
Light comp
No No mly None N/A N/A N/A N/A
(1987) ariso
assign
n
ed
betwe
en
group
s)

Milan
s,
Gonza
lez,
Herna
ndez,
Armin
No No No N/A None N/A N/A N/A N/A
io,
Clesca
and
Rivas-
Veten
court
(2003)

Nelso Rando No Yes Not None Field testing N/A N/A


n, m rando of the
Mary cluster mly questionnaire
Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

mont,
Duran (but
d, probabi validity/relia
assign
Reyes lity bility
ed
and method assessment
Davis not detailed)
(1992)

Niday,
Painte
r,
No No No N/A None N/A N/A N/A N/A
Peak
et al.
(2007)

Not
Riker
rando
and
No No Yes mly None N/A N/A N/A N/A
White
assign
(1995)
ed

Shafer
,
Duran
d,
No No No N/A None N/A N/A N/A N/A
Huene
ke, et
al.
(1998)

Stark, No No No N/A None N/A N/A N/A N/A


Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

Wikor
en and
Marto
ne
(1994)

Taylor Cha
, nge
Young theor
and No No No N/A y N/A N/A N/A N/A
Knete (not
man refere
(1997) nced)

Van
Gelder
, Van
Hees,
de
Roey,
Monb No No No N/A None N/A N/A N/A N/A
aliu,
Aerts,
Coose
mans
et al.
(2006)

Wight No No No N/A None N/A N/A N/A N/A


,
Cohen
Assessment
Population Intervention Analysis
tool(s)a

Justifi Alloc Unde


Inten
Rando cation Contr ation rlyin Attri
Valid Relia tion-
Papers mizatio of ol conce g tion
ity bility to-
n sampl group almen theor rate
treat
e size t y

,
Roels
and
Miran
da
(2000)

aThe assessment tools assessed were only those regarding outcomes assessed in this
systematic review, that is, professional practices or donation rates; when the outcome
was an objective measure (donation rate or any quantitative item retrieved from
medical records review), validity and reliability were considered nonapplicable.

N/A, not applicable.

Efficacy of the interventions

Intervention studies with comparison groups

Among the 15 studies included, only five had a comparison group (Table 2) [23, 32,
33, 34, 35]. The specific populations in these studies were nurses [32, 33, 34],
physicians [23, 33, 34] and residents in medicine [35]. In addition to HPs, three
studies also included other allied HPs such as chaplains or administrators [32, 33, 34].
All the studies used educational interventions to increase donation and one also used
an organizational strategy. None of these interventions were based on a theoretical
framework. According to the list of behavior change techniques [11], the majority of
the strategies provided instruction on the donation process, the HPs role or how to
cope with families reactions.

Table 2

Description of the interventions on organ and tissue donation with comparison groups
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

Educati Experi
onal: mental
To 18%
gain a 38%
better Formal (P
underst in- =.039)
anding service
of on
health organ
care and
Dettle, profess tissue
Sagel ionals donatio
and experie Nurses n Health Appr
Chrysl nce, and Provi profes oache
6 mo
er knowle Chapla Unit de sional d
nths
(1994) dge, ins (n meetin instru s famil
; attitud =343) g ction survey y Control
United es, and address 4%
States comfor ing 25% (P
t level donatio <.001)
regardi n issues
ng
organ
and Dealing
tissue with a
donati family
on of an
actual
donor

Kittur, To Hospit Educati 12 m Not Referr 44


McMe evaluat al onal: onths Provi menti ed donors
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

namin e the staff: de oned


and impact physici instru
Knott of an ans, ction
(1990) organ nurses
; donor and
United and admini Hospita Provi potent versus
States tissue strators ls de ial 2
donor (n= organ contin donor donors
advoca not and gent
cy mentio tissue rewar
progra ned) donatio ds
m on n
comm policies
unity and Teach
Organ 18
hospita proced to use
and/o donors
ls ures promp
r versus
ts or
tissue 1 donor
cues
donor
Sendin
recov
g letter
ered
of
gratitud
e to
request
ors


Sendin
g letter
remindi
ng to
request
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

all
eligible
patients

Organi
zational
:


Develo
ping a
donor
advocat
e role

Light To Reside 4 mo Eye Organ


(1987) evaluat nts (n nths Provi bank and/o
; e the =84) de data r Experi
United efficac infor analys tissue mental
Educati 1.8%
States y of matio is donor
onal:
includi n on recov
ng conse ered 10.2%
printed quenc (P
criteria e =.009)
and
proced
ures Instruct Provi
Control
with ion for de
7.1%
the cornea instru

autops donatio ction
8.5%
y n and a
(not
permit checkli
signific
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

ant)
s as a st of
simple, donation
inexpensi procedure
ve s
method
Nelso To Nurses Educati Not Health Appr 59%
n, examin , onal: ment Interv profes oache versus
Mary e the physici ioned ention sional d 46% (P
mont, organ ans not s famil =.027)
Duran procur and Contin descri survey y
d, ement chaplai uing bed
Reyes organi ns (n= medical
and zation 265) educati
Davis s on
(1992) educati
; onal
United activiti Newsle
States es and tters
their
effects Other
on publica
attitud tions
es,

knowle
Reques
dge,
tors
and
worksh
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

op

In-
service
training
session

referral
behavior Referr
Others 46%
ed
progra versus
potent
ms 9% (P
ial
=.001)
donor

Riker To Physici Educati 6 mo Hospit Appr 65%


and evaluat ans (n onal: nths Provi al oache versus
White e =not de charts d 6.6%
(1995) physici mentio One- instru review famil (P
; an ned) hour ction y =.001)
United respon confere
States se to nce on Obtai
32%
an the ned
versus
educati physici donati
6.6%
onal ans on
(P
progra role in conse
=.08)
m to requesti nt
increas ng
e donatio Organ 48%
referral n and and/o versus
of review r 5.5%
potenti the tissue (P
al criteria donor =.003)
Results
Behav
Autho
ior Study
rs Popula (Experi
Purpos Interve Follo chang metho Outco
(year); tions mental
es ntions w-up e dolog mes
countr (n) versus
techni y
y Control
que
)

recov
ered
organ or for
issue donation
donors in and
an services
emergenc
Relative risks available
(risk ratios) were computed to determine how likely participants were to
adopt a behavior related to organ and tissue donation following an intervention,
compared with those not exposed to the intervention (Table 3). Due to a high level of
heterogeneity, the relative risks were calculated independently for each study and not
pooled together.

Table 3

Efficacy of interventions with a comparison group on health professionals (HPs)


behavior

Risk ratio (95%


Studies Outcomes
CI)

Dettle et al. (1994) Approached family 1.53 (0.82, 2.85)

Referred potential donor N/A


Kittur et al. (1990)
Organ and/or tissue donor
N/A
recovered

Organ and/or tissue donor


Light (1987) 1.19 (0.45, 3.12)
recovered

Nelson et al. (1992) Approached family 1.28 (1.01, 1.61)


Risk ratio (95%
Studies Outcomes
CI)

Referred potential donor 5.04 (2.79, 9.10)

Riker and White


Approached family 9.71 (1.44, 65.53)
(1995)

Obtained donation consent 4.85 (0.69, 34.28)

Organ and/or tissue donor


8.67 (1.24, 60.58)
recovered

The intervention studies of Nelson et al. [33] and Riker and White [23] showed
significant relative risks for the following: approaching families [23, 33], referring
potential donors [33] and increasing donation rates [23]. However, the interventions of
Dettle et al. [32], Light [35] and Riker and White [23] did not result in a significant
increase in the number of signed consents for donation. No relative risk could be
computed for the interventions of Kittur et al. [34], since the results were presented in
absolute numbers instead of percentages, and there were no data on the total size of
the groups.

Intervention studies without a comparison group (pre-post assessments)

The remaining ten studies used pre-post assessments (Table 4) [36, 37, 38, 39, 40, 41,
42, 43, 44, 45]. These studies evaluated behavior change toward donation among HPs
or the impact of their intervention on donation rates. The participants targeted in these
interventions were mainly nurses and physicians. However, six of these studies
involved hospital staff, without specifying which types of HPs were targeted [36, 38,
40, 42, 44, 45]. Also, in six of the ten studies, the number of participants was not
provided [36, 37, 41, 42, 43, 44].

Table 4

Description of interventions on organ and tissue donation with only pre-post


assessments
Auth Behav Results
ors ior Study
(year) Purpos Populat Interve Follo chang metho Outco
; es ions (n) ntions w-up e dolog mes (pre
count techni y post)
ry que

Educati
onal:


Detec
Trainin
ted 81.0%
g in
poten
family
tial 97.5%
intervie
To donor
w and
present
commu
the
nicatio
results
Alons n
of a
o,
pilot
Ferna Medic
study Hospit
ndez, Trainin al
carried al staff 12 m Provid
Matai g in record
out in (n=not onth e
x et donor s
Seville, mentio s instruc
al. detectio revie
Spain, ned) tion
(1999 n and w
evaluat Orga
); brain
ing the n
Spain death
donor and/o
diagnos 32.1%
action r
is
progra tissue
44.4%
m donor

recov
Creatin
ered
g
guideli
nes for
donatio
n
process
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
Beasl To Physici 24 m Medic
ey, increas ans, onth Provid al
Educati
Capo e organ residen s e record
onal:
ssela, donatio ts, instruc s
Brigh n in 50 nurses, tion revie Appr 69.0%
am, hospita social w oache
Gund ls in worker d 85.6%
erson three s, Present Provid famil (P
and organ chaplai ation of e y =.001)
Gort procur ns and donatio feedba
make ement admini n ck on
r organiz strators protoco perfor
(1997 ation (n=not ls mance
); service mentio
Unite areas ned)
d simulta Review
States neousl health Refer 55.5%
y by professi red
using a onal poten 80.2%
large- role in tial (P
scale donatio donor =.001)
interve n
ntion process


Depart
Obtai 50.9%
ment
ned
meetin
donat 52.2%
g
ion (not
conse signific
In-
nt ant)
service
s

Organiz Orga 32.9%


Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
ational: n
and/o 42.5%
Organ r (P
donatio tissue =.005)
n donor
protoco recov
ls ered

o
Potenti
al
donor
identifi
cation

o
Notific
ation of
the
organ
procure
ment
organiz
ation

o
Ensurin
g
decoupl
ed
request

o
Private
setting
to ask
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
for
donatio
n

o
Active
inclusio
n of
organ
procure
ment
organiz
ation in
request

Bleak To Clinica Educati 12 m Not Refer 4121


ley increas l staff onal: onth Interv menti red (donors)
(2010 e the s ention oned poten
); numbe (n= not tial
Unite r of 170) Educati descri donor
d donate on bed
King d progra
dom organs m on
throug require
h an d
effectiv referral
e donor
identifi Organiz
cation ational:
and
referral
scheme Hospita
in a l policy
large on how
acute to make
a
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni

referral
hospitals
critical
Milan To find Health Educati 24 m Medic
s, solutio care onal: onth Provid al
Gonz ns to staff in s e record
alez, the the instruc s
Hern critical critical Detecti tion revie
andez donor care on, w Detec
, shortag area (n identifi ted 8.1%
Armi e =97) cation poten
nio, situatio and tial 57.5%
Clesc n, and donor donor
a and its criteria
Rivas negativ
- e Death
Veten socioec diagnos
court onomic tic
(2003 impact
); in our Donor Orga 1.6%
Vene society, mainte n 9.1%
zuela by nance and/o
imple r
Organ tissue
mentin
and donor
ga
tissue recov
transpl
viabilit ered
ant
y
coordi
studies
nation
progra

m in a
Family
hospita
intervie
l with a
w,
variety
requesti
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
ng
consent

Organ
sharing,
allocati
on and
preserv
ation
of
departme
nts, Transpl
including ant
neurosur ethics
gery and and
kidney legislati
transplant on
ation
Nida To Educati 6 mo Revie Orga
Nurses
y, imple onal: nths Provid w of n
Paint ment e death and/o
er, and (n= instruc record r
Peak evaluat 12) Scripte tion s tissue 6.3%
et al. ea d donor
(2007 scripte instruct recov 20.6%
); d ion to ered
Unite inform prompt (corn
d ation nurses eal
States about to rates)
organ introdu
and ce the Orga 0.0%
tissue subject n 0.0%
donatio of and/o
n for donatio r
hospic n tissue
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
Organiz
ational:

Give
tissue
donatio
n
informa
tion
upon donor
admissi recov
on as ered
part of (tissu
e
the e
inpatient
normal rates)
on
admissi
admissio
on
n
process
and
then
repeate
d at the
time of
death.

Shafe To Nurses 17 m Month Refer 24


r, determ and Educati onth Interv ly red 139
Dura ine hospita onal: s ention death poten (donors)
nd, whethe l staff not record tial
Huen r descri s audit donor
eke, donors (n=25 bed (orga
et al. could hospita Trainin n)
(1998 be ls) g
); produc activiti
Unite ed es
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni

Educati
on Refer
progra red
ms and poten 202
materia tial 3,931
ls donor (donors)
(tissu
Organiz e)
ational:

d States from Orga


non- n
donor 844
donor
hospitals Develo (donors)
recov
p in- ered
house
coordin Tissu
ators e 154
donor 423
recov (donors)
ered

Stark, To Physici Educati 24 m Not Detec 45.7%


Wiko develo ans, onal: onth Provid menti ted
ren p and nurses s e oned poten 92.0%
and pilot an and inform tial
Mart organ hospita Partner ation donor
one donatio l s in on
(1994 n person organ conse
); progra nel (n donatio quenc
Unite m that =not n es
progra
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
d States focuses mentione m
on the d)
collabora o Obtai 17.1%
tive Promot Provid ned
efforts of e e donat 56.0%
the entire positive instruc ion
health attitude tion conse
care s nt
team, toward
hospital donatio
administr n
ation and (aware
organ ness)
procurem
ent o
agency Recogn
ize
potenti
al
donor

o
Offerin
g the
option
of
donatio
n

o
Support
the
grievin
g of
donor
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
familie
s

Organiz
ational:


Develo
p nurse
request
or role

To Educati
describ onal:
e the
18
develo
donors
pment Classro
Taylo per
of a om
r, million
progra Intensi instruct
Youn populati
m to ve care ion
g and Not on31
cross- units Provid Not Donat
Knete ment donors
train nurses e menti ion
man ione per
critical (n=not instruc oned rates
(1997 d million
care mentio tion
); populati
nurses ned) Precept
Cana on
as or
da (72%
organ clinical
increase
procur experie
rate)
ement nce
coordi
nators

Van To Depart Educati 48 m Not Orga 230


Gelde measur ments onal: onth Provid menti n 301
r, Van e the of e and/o (donors)
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
instruc
tion


Inform
ation
impact neurolo
on
of an gy,
Hees, donor
interve neuros
de criteria
ntion urgery,
Roey, r
plan anesthe
Monb tissue
design siology (P
aliu, Comm donor
ed to , <.05)
Aerts unicati recov
optimi intensi
, on ered
ze the ve care Provid
Coos betwee s oned
donor medici e
eman n donor
detecti ne and feedba
s et and
on abdomi ck on
al. transpla
process nal perfor
(2006 nt
and transpl mance
); centers
donor ant (n
Belgi
referral =not
um Organiz
pattern mentio
ational:
s ned)


Facilita Tissu 66
tion of e 180
proced donor (donors)
ure recov (P
ered <.001)

Wigh To Intensi Educati 12 m Medic Orga 122%


t, evaluat ve care onal: onth Provid al n increase
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
Cohe e the units s record
n, immed staff (n (Unit e s
Roels iate =not ed instruc revie
and (6 mon mentio King tion w
Mira ths), ned) dom)
nda short- (6 mont
(2000 term 24 m hs)
); (1 year Educati onth
Unite ) and onal s
d sustain progra (Spai
King ed m on: n) Provid
dom (2 year e
s) o feedba
effects Family ck on donor
of the care perfor recov
Donor and mance ered
Action commu (Unit
progra nicatio ed
m on n King
donatio dom.)
n rates o
in Donor Promp
40%
differe mainte t
increase
nt nance practic
(12 mon
countri e
o ths)
es
Organ
retrieva
l

Organiz
ational:


Formin
Have 16%
Auth Behav Study Results
ors Purpos Populat Interve Follo ior metho Outco
(year) es ions (n) ntions w-up chang dolog mes (pre
; e y post)
count techni
referr
ed
poten increase
tial (24 mon
donor ths)
(Spai
n)

g a Donor Orga
Action n
33%
committe donor
increase
e recov
(24 mon
ered
ths)
(Spai
n)

All the studies used educational strategies or a combination of organizational and


educational strategies to promote donation behavior among HPs. In the study of
Taylor et al. [41], there were references to the concept of change theory in the
development of their intervention, but none of the other studies used a theoretical
framework to guide the development of their intervention. The most common
technique was to provide instruction on the donation process, the identification of
donor criteria, the HPs role in the donation process and how to approach family
members to initiate discussion.

Discussion

This systematic review summarized the studies assessing educational and/or


organizational interventions aimed at HPs to improve professional practices regarding
the donation process or increase donation rates in clinical settings. A total of 15
studies were identified, among which only five had a comparison group. No study
referred to a theoretical framework, either for the development of the interventions or
their assessment. The behavior change technique most often used consisted of
providing instruction on the donation process, including criteria and the role of HPs
(how to approach family members, to initiate discussion or how to cope with families
reactions).
Based on our review, the selected interventions aimed at changing HP practices
regarding donation were developed, for the most part, more than a decade ago. Recent
developments in donation emphasized the introduction of OPO representatives [46,
47] and the regulation ensuring donation after death (such as presumed consent) [1]. If
organ donation rates increased following the introduction of OPOs in clinical settings
[46, 47] or following a change in regulations [1], HPs still have to notify procurement
organizations of any potential donors, leaving place for more research and
interventions to help HPs in the donation process.

Impact on donation-promoting professional practices

Although there are many interventions aimed at changing HPs behavior toward the
organ and tissue donation process in clinical settings, only a few were carried out
exclusively among HPs whose job position requires them to be in contact with
patients and who are in a position to ask for donation consent [23, 32]. Indeed, most of
the interventions also targeted hospital administrators, clerical staff and chaplains [32,
33, 34, 37]. As such, it is difficult to isolate the impact of these interventions on
nurses and physicians behavior.

The lack of studies assessing the behavior changes or health outcomes in this literature
review is consistent with a recent publication that reviewed the evaluation of inter-
professional education programs. According to Kirkpatricks levels, [25] only 9.7% of
program evaluations assessed changes in behavior, 0.004% examined organizational
practice changes and no items addressed benefits to patients [48]. Similar results were
obtained in continuing nursing education programs [49].

Impact on donation rates

Interestingly, more than half of the studies included used an objective measure of the
impact of the intervention on donation rates. This was achieved by extracting the
information from medical records to evaluate the number of deaths (potential donors)
and the number of actual donors [23, 39, 44]. This type of measure is obviously better
than using self-reported behavior and provides more confidence in the observed
effects.

Behavior change strategies and underlying theoretical framework

Surprisingly, in spite of the HPs role of gatekeeper in the donation process, there is a
lack of sound theoretical interventions aimed at improving professional practices
regarding the donation process or at increasing donation rates. None of the
interventions were developed with reference to a behavior change theory, except the
study by Taylor, Young and Kneteman [41], which mentioned the use of the concept
of change theory, but without explaining how it was applied.
The fact that the interventions included in the present review had a poor theoretical
basis and an inappropriate evaluation of their impact has important clinical
implications. OPOs and donation stakeholders seem to apply nontheory-based
intervention strategies without being sure of their efficacy. These interventions have
an important cost for the healthcare system without resulting in significant changes
(for example, increases in donation rates).

Quality of reviewed studies

The interventions presented several weaknesses in their evaluation designs. For


instance, only five of the 15 studies identified used a comparison group to ensure that
the intervention effects could be attributed to the implemented change strategy [23,
32, 33, 34, 35]. In addition, significant methodological flaws (for example, vague
definition of the intervention, absence of a theoretical framework, lack of explanations
on the study design, unjustified sample size) were noted.

Many of the studies included showed nonsignificant improvements in the detection of


potential donors, approaching families and achieving consent or increasing donation
rates in clinical settings [32, 35]. Yet, some studies have proven that providing
instruction on the donation process can significantly change HPs behavior over a
period of 6 to 24 months [23, 33]. However, it was not possible to establish whether
an intervention was efficient due to methodological flaws, poorly described population
or the lack of details on the content of the interventions and evaluation. Moreover, it
was not possible to determine the efficacy of studies only using a pre-post evaluation
because of the lack of a control group.

Limitations of the systematic review

The present review has some limitations. Only a small number of studies could be
included in the analysis because most did not use a control group to compute a relative
risk. Not all interventions reported the required information to compute relative risk
(that is, number of participants in the experimental and the control groups). Moreover,
the variability of the intervention strategies and the different HP practices on donation
prevented the computation of some comparisons and the pooling of relative risks.

Conclusions

Despite the large number of publications on interventions to improve HPs practices


regarding the donation process or increase donation rates, few of these interventions
have been evaluated, or the associated assessments have methodological flaws that
make it difficult to draw clear conclusions regarding their efficacy. Therefore,
interventions aimed at improving the donation process or increasing donation rates
should be based on sound theoretical frameworks and would benefit from more
rigorous evaluation methods to ensure good knowledge translation and appropriate
organizational decisions to improve professional practices.

Authors information

FD is a PhD candidate at the Faculty of Nursing at Laval University (Quebec City,


Canada) and a clinical nurse specialist at the Institut de cardiologie et de pneumologie
de Qubec. GG is a professor at the Faculty of Nursing at Laval University. LAVI is a
research professional at the Faculty of Nursing at Laval University.

Abbreviations

HP:

health professional

OPO:

organ procurement organization.

Declarations

Acknowledgements

The authors thank Knowledge Translation Canada (KT Canada) for their financial
support.

Electronic supplementary material

13737_2013_63_MOESM1_ESM.pdf Additional file 1: Search strategy for each


database. (PDF 91 KB)

Below are the links to the authors original submitted files for images.

13737_2013_63_MOESM2_ESM.pdf Authors original file for figure 1

Competing interests

The authors declare that they have no competing interests.

Authors contributions

FD contributed substantially to developing and designing the study, acquiring data,


analyzing and interpreting data and drafting the manuscript. GG contributed to
developing and designing the study, interpreting data and drafting the manuscript.
LAVI contributed to extracting data and drafting the manuscript. All authors have read
and approved the final manuscript.
Authors Affiliations

(1)

Institut universitaire de cardiologie et de pneumologie de Qubec

(2)

Ferdinand-Vandry Building, Faculty of Nursing, Laval University

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