Methods of reducing the waiting list for renal transplants in Scotland

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Methods of reducing the waiting list for
renal transplants in Scotland and the UK
Aims
To consider:
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The assessment criteria of kidneys from deceased donors and
whether this criteria should be broadened to maximise the use of
donated kidneys.
Methods of matching donor kidney quality with patient predicted
survival to reduce death with graft function.
The effects of factors on the outcomes of living kidney donor
transplantation on living donors and recipients to increase the
number of successful transplants.
Models of organ donation used in other countries, and whether
they could be applied in the UK and Scotland to reduce waiting
times.
The most effective methods for approaching relatives of
deceased donors to gain consent for organ donation.
Reasons behind the disparity in organ donation rates
among different ethnic groups and strategies which could be
implemented to resolve lower rates among ethnic minorities.
Methods of living kidney transplantation including kidney paired
donation.
"England donor cards, 1971-1981"
by Science Museum, London, Wellcome Images is licensed
under CC by 4.0
This site was made by a group of University of Edinburgh medical
students (see contributions) who studied this subject over 10 weeks
as part of the SSC (SSC web pages).
This website has not been peer reviewed.
We certify that this website is our own work and that we have
authorisation to use all the content (e.g. figures / images) used in
this website
We would like to thank Dr Paul Phelan and Dr Eoin O'Sullivan for
their guidance throughout this project.
Total word count: 10,612
Word count minus Contributions page, References page, Critical
Appraisal Appendix, Information Search Report and Word Version
appendix: 5,907
Header photo
from the 20th U.S. edition of Gray's Anatomy of the Human Body,
originally published in 1918 and therefore lapsed into the public
domain. Gray1121.
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Introduction
Over the past 24 years 15,480 patients, who have developed Endstage renal disease (ESRD), have been registered to the Scottish
Renal registry (SRR)1 -of which 10,613 are now deceased. These
figures are a microcosm of the severity of the problem not only seen
in Scotland, but also globally such as in the USA where waiting
times can exceed 5 years2. The donation of kidneys has two
possible sources: living and deceased donors. Within
Scotland, there has been no net increase in the number of
deceased donors since 1993 as can be seen from the graph below.
This is despite an increase of those starting Renal Replacement
Therapy by 56% over the same 20 year period. However, living
donations have continued to increase since the inception of records
in 19601.
A bar chart showing the frequency and donor type for kidney transplants in Scotland
between 1960 and 2011. (CLICK TO ENLARGE). Source: ISD Scotland. Available
from: http://www.srr.scot.nhs.uk/Publications/PDF/scottish-renal-registry-report-2013web.pdf?2 (Page 29)
Different countries have tried different methods to increase their
source of kidneys with varying success. These methods can be
studied to highlight potential strategies to improve kidney donation
rates in Scotland and the UK. Spain has been internationally
singled out as having an extremely successful deceased donor
program for organ retrieval3.
There are also a number of ideas to increase living donor donation,
such as “dominos”4, which aim to further increase the number of
viable kidneys for transplant. Kidneys from living donors offer
significant advantages such as better results and less aggressive
immunosuppressive courses following
transplantation5. By maximising the number of transplants, people
can be taken off dialysis sooner. This increases both the life
expectancy and the quality of life of the patient6, which highlights the
importance of striving to improve the number of kidneys donated
and the project we have chosen.
In addition to increasing donation rates, the criteria used to match
donors and recipients could be more effective. This would prevent
the wasting of possibly viable kidneys for transplant, as well as
matching kidneys to suitable recipients, to reduce the likelihood
of returning to the waiting list.  By examining the various methods of
how the organ transplantation system works within a variety of
healthcare settings, we can assess their benefits and drawbacks.
We also assess if they would be successful in increasing the
number of renal transplants within Scotland and the UK.
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Criteria involved in kidney transplantation
from deceased donors
Deceased donor kidneys are either from donation after brain-stem
death (DBD) or donation after circulatory death (DCD). DBD refers
to donors who are pronounced dead using neurological criteria
generally in an Intensive Care Unit; cardiac circulation and
ventilation is maintained by medical intervention1. DCD describes
organ retrieval following death due to heart or circulatory failure.
DCD is becoming more common, and has attributed to the 11%
increase in deceased donor renal transplantation in 2013-142.
DCD kidneys are associated with a greater risk of delayed graft
function (the need for dialysis within the first week posttransplantation) and primary non-function, making them
suboptimal3. However, they show little difference in 5-year patient
and allograft survival compared with DBD kidneys and importantly,
increases the donor pool1.
Furthermore, donor kidneys are assessed by quality and are
categorized as standard-criteria donors (SCDs) or expanded-criteria
donors (ECDs). ECDs refer to donors over 60 years of age or aged
50-59 with two of the following features: history of hypertension,
terminal serum creatinine >1.5mg/dl (indicating renal insufficiency)
or death via cerebrovascular cause. These characteristics indicate a
70% greater risk of graft failure compared to SCD kidneys 1. SCD
kidneys have none of the characteristics of ECD kidneys and are
from DBD only.
The ECD category indicates the significance of factors, such as
donor age and comorbidities, on the clinical outcomes of renal
transplantation such as acute rejection, delayed graft function
and patient and allograft survival1. Other key donor kidney
assessments include HLA typing (of HLA-A, B and DR antigens),
blood group matching and serology tests for presence of
transmissible infections such as HIV or Hepatitis C. In the UK,
allocation of kidneys is based on points system for patient waiting
time, HLA matching and sensitization3.
However, investigations of suboptimal kidney transplantation
suggest scope for broadening the criteria. Every year in the UK
many available deceased donor kidneys are rejected despite critical
demand4. Age is a key reason for kidney discard. Kidneys from
donors over 65 years have a higher risk of graft loss and mortality,
and there is generally a longer cold ischemic time. The likelihood
of comorbidities and obesity is generally higher in kidneys of aged
donors, reducing the quality of the kidney4. However, research
shows that short-term graft survival is similar to that of younger
organs, and there are improvements to the recipient's quality of life
compared with remaining on dialysis. Of particular note, the study
by Chavalitdhamrong et al concluded that the relative risk of patient
death was less when older ECD kidneys were transplanted into
recipients over 60 years, compared with younger recipients 5. This
retrospective cohort study had a relatively large sample size so the
likelihood of chance affecting the results is limited. However, the
follow up period was short (5 years) so long term outcomes remain
to be seen. The study suggests that transplantation of older kidneys
could have better outcomes if recipient age parameters were
adopted; further supported by other research6. This use of elderly
donor organs can be seen in Spain, a country well recognised for its
successful organ transplant system, where 40% of total renal
transplants are from donors aged over 60 years3.
The presence of active HIV disease is a contraindication for renal
transplantation in the UK3. Recent research into the use of HIV+
donor kidneys has shown promising outcomes of good short-term
patient and allograft survival7. Given that appropriate tests are
carried out, the recipients would face no additional risks. A South
African study showed HIV+ donor kidneys transplanted into HIV+
recipients resulted in good graft function and no need for dialysis at
12 months8.
Current classifications of “suboptimal” kidneys may be too
restrictive; Hwang et al. found that long-term differences in patient
and graft survival and mean glomerular filtration rate between grafts
from ECD and SCD transplants were not
statistically significant9.  Although the incidence of delayed graft
function was significantly higher in ECD kidneys, this was not a risk
factor for graft survival in a multivariate model. However, the study
was conducted at a single centre so it may not be widely
representative.
In conclusion, further development of approaches to modify and
broaden listing criteria will help to reduce organ shortage
and waiting list mortality, and also improve long-term outcomes
after transplantation.
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Matching kidney quality to patients'
predicted survival rates
Maximising the use of each kidney donated can reduce the waiting
list for kidney transplants so patients either return to the list at a later
date or do not return at all. To do this measures must be taken to
prevent death with graft function (DWGF) which is one of the ways
in which a transplanted kidney can fail- one study reported DWGF
to account for 42.5% of all graft loss1. This study highlighted two
other studies with similar findings reinforcing its reliability. DWGF
could be reduced by matching better quality kidneys with patients
that have a better survival prospect for the future.  For example,
consider there are two patients, one with a much higher life
expectancy than the other and two kidneys, one of which is in a
much better condition. The kidneys are allocated randomly, and the
patient with the lower life expectancy, by chance, receives the
kidney in the better condition. He subsequently dies with graft
function and the second patient outlives his kidney and has to be
added to the waiting list for a second kidney, increasing the list’s
size. Whereas, if the first patient had received the worse kidney,
they would have died at a similar point to that when the graft failed
and the second patient would have had his kidney for longer and
potentially not had to go on to the waiting list again. To carry
out this matching process there has to be a way of categorising
kidney quality which is affected by the criteria mentioned in the
previous section and also a method of categorising recipients in
relation to their survival prospects.  
 
A potential classification is the Kidney Donor Risk Index (KDRI). It
uses ten donor factors to predict failure of graft function which
include age, height, weight, ethnicity, history of hypertension or
diabetes, cause of death, serum creatinine, hepatitis C serology and
donation after cardiac death 2 . The study to determine these factors
was carried out on a large population of 69,440 patients which
reduced the influence of chance. The study also used stratification
in the statistics to minimise the impact of confounding. The KDRI
can then be used to generate the Kidney Donor Profile Index
(KDPI) which is the KDRI of a kidney relative to a reference point
which is the median donor of the year before3.  The KDPI is an
improved scale as it uses more variables to make a more accurate
assessment and it separates the kidneys into percentiles to allow
for better matching. On the other hand, it still is not a perfect system
as it does not take into account all factors which have an influence
on the length of time of graft function, such as trauma to the kidney
and HLA mismatches. The KDPI system can therefore not be used
independently.    
 
Recipients also have to be assessed for their likely long-term
survival to determine whether they are suitable. One quantification
of survival is the Estimated-Post Transplant Survival score (EPTS). 
This score is based upon the candidates age, dialysis duration,
prior solid organ transplant and diabetes status4. An example of the
patient matching is that those in the top 20th percentile EPTS score
are given kidneys with a KDPI of less than 20%. When using KDPI
and EPTS to match kidneys to patients in the US it was simulated
to result in an increase in the average projected median lifespan
after transplantation and would increase the time spent with a
functional allograft4. For 11,000 transplants, the prediction was that
there would be an increase of 9,130 life-years of patient survival
and 2,750 years of allograft survival.    
 
In conclusion, the KDRI and KDPI is a possible method of
quantifying the quality of kidneys being donated. Along with the
EPTS for classifying potential candidates there can be appropriate
longevity matching, meaning that fewer kidneys would fail due to
death with a functional graft. This could therefore be used in
Scotland and the UK as a method of maximizing longevity of the
allograft for an individual patient and increasing utility of the
transplant on a societal level.
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Living kidney donation
Living kidney donor transplantation (LKDT) offers superior patient
outcomes compared with deceased donor kidney transplantation
and allows a wider range of patients to receive and benefit from a
kidney transplant. It is a highly progressive area of donation and
transplantation, having trebled in number from 2000 to 2010 and
increased by 4% from 2013-20141 in the UK. There is potential to
increase the number of donors and recipients viable for LKDT. The
reduced risk of allograft failure from LKDT prevents the wasting of
donated kidneys, contributing to decreasing the demand of organs
and waiting times.
The development of expertise in immunology and blood
group matching has enabled planned LKDT to be a treatment of
choice for complex recipients. A single-centre study evaluated
rates of survival after LKDT in 211 consecutive patients with donorspecific anti-HLA antibody after undergoing desensitisation. The
study concluded that this provided a significant survival benefit
compared with matched control subjects who were waiting for a
compatible kidney2. However, one limitation is that the follow up
time was less than 3 years for half of the patients. A US study
comparing patients who underwent live-donor ABO
incompatible (ABOi) transplantation with ABO compatible-matched
controls concluded there is long-term patient and graft survival
for ABOi recipients; confounding factors may have affected the
results3. These factors can expand the number of suitable patients
for kidney transplants, decreasing the waiting times for organ
transplantation.
It is vital donors are informed of the potential health risks of
donation to ensure their welfare and safety is protected. Two
prospective studies in the US4 and Norway5, with large cohorts,
compared the risk of living donors developing ESRD
after donation with nondonors. The general population is
unscreened and are at a much higher risk of developing end-stage
renal disease (ESRD) than living donors, who are free of
contraindications before donation. Therefore, healthy cohorts of
nondonors with an equally low risk of renal disease and free of
contraindications to live donation were used to avoid unreliable
comparisons. Both studies concluded that kidney donors had a
small increased risk of developing ESRD compared with the
matched healthy donors. The presence of a potential genetic
predisposition to kidney disease among related donors may have
caused bias in the results. A retrospective, matched-cohort study in
Canada compared the risk of gestational hypertension and
preeclampsia in living kidney donors and nondonors, concluding it
is more likely to be diagnosed in donors, although the risk of serious
maternal and foetal outcomes remain low. This study may have
been distorted by racial information not recorded, a factor which
contributes to the risk of hypertension6. Although there are
associated risks for living donors, they are likely to be outweighed
by the benefits of LKDT when a potential living donor is considering
donation. One study investigated the psychological impact of
donation on the donor and found the donors showed positive
perceptions about donation with a decrease in depression scores7.
Only biologically related living donors were studied and therefore it
is not representative for living unrelated donors. Increasing the
awareness of the small magnitude of risks involved with LKDT may
encourage potential living donors to consider donation.
The introduction of laparoscopic living donor nephrectomy (LLDN)
in 1991 is believed to have had a causal effect on the increase in
LKDT, now the standard approach for donor nephrectomies across
the world8. Studies have found an association of LLDN with a
reduction in the size of incision, length of hospital stay and
magnitude of convalescence9. This reduces the surgical risks to the
living donor, a possible deterrent to donation.  A retrospective
matched-pair comparison between LLDN and  laparo-endoscopic
single site surgery (LESS) suggested a possible association
between quicker convalescence and LESS donor nephrectomy10.
This could encourage an increase in living donors. Due to a
limitation in time, only single-centre studies on the effect of surgical
techniques on living donor motivation have been
conducted.   Advancements in surgical technique of nephrectomies
could improve prognosis for donors and encourage an increase in
donors.
Considering the effects of factors on the outcomes of LKDT for
living donors and recipients is vital to maximise the number of
successful LKDT. Further research and advancements into the
recruitment of living donors can increase the number of LKDTs,
contributing to the donor pool and decreasing the waiting list.
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Models of organ donation
The current model for Scotland is an opt-in system requiring
consent from relatives for organ donation to occur. There
is a Specialist Nurse for organ donation in some centres to
coordinate the process, however, asking for consent primarily is by
physicians1.  
Every current model for organ donation has its advantages and
disadvantages and the Spanish model is upheld as an exemplary
model world-wide for deceased donor donation with a kidney
transplant rate of 46.3 per million population (pmp)  compared to a
UK rate of 34.2 pmp in 20132. The Spanish model has achieved
such high rates through a proactive approach performed by welltrained transplant coordinators working at a national, regional and
hospital level, using a “soft” opt-out system where families must
give consent3. The opt-out system is sometimes presented as the
reason for higher donation rates in Spain, but the requirement for
consent from families cannot allow this conclusion to be
drawn4. This integrated approach has been aided by adequate
management of mass media relations which has helped to create a
positive social atmosphere. This  has been key to the success of
the Spanish model as it enables the transplant teams to openly
discuss organ donation with families, leading to low levels of refusal
(15.9%) compared to the high rate of refusal in Scotland (40%)5.
Creating an atmosphere where talking about organ donation is
normal is essential to achieving a higher rate of organ donation in
Scotland.  
A diagram showing the variation in rates of kidney transplants from deceased donors
across Europe (CLICK TO ENLARGE). Altered from an image on Wikimedia
Commons by Michael Bennett with data from the International Transplant
Newsletter(2). Original image is licensed under the CC Attribution-Share Alike 3.0
Unported license.
Similarly, the American model for organ donation exemplifies the
importance of a proactive approach, with Organ Procurement
Organisations actively seeking consent. The ‘Required Request’
system makes it illegal, immoral and irresponsible to turn
off ventilatory support without considering organs for
donation6. However, these Organisations are not as successful as
the Spanish Model because the Organisations are external to
hospitals, and so there is an absence of in-hospital coordinators;
even small Spanish hospitals have a coordinator in house 7. This
highlights the need also for an integrative approach with
responsibility given at each level.  
 
As mentioned previously, the opt-out system is unlikely to be the
sole reason for Spain’s success, however Austria have a ‘harder’
form of presumed consent. In Austria, organ recovery is standard
unless an objection was made by the patient or family before death
which resulted in a 5 fold increase in organ donation over 5
years8.  While such systems have had some increase in overall
organ donation rates, they haven’t been nearly as successful as
Spain. However, there exist worries that this 'harder' model could
polarise public opinion, be ethically impermissible or even be open
to successful legal challenge4.   
 
The Iranian model uses paid living donation which has resulted in
the renal waiting list being entirely eliminated. A paper
by Ghods explores the model’s significant
ethical implications9.The author helped develop the model
which may have skewed the paper toward the benefits of
the system. One of the successes is that organ donation has been
available irrespective of income. This is done through government
funding of treatments, gifts from wealthy recipients, or charities
where the recipient is poor. Donors are also provided with life-long
health insurance after donation. One of the ethical problems is that
84% of donors are poor. Despite this over half the recipients are
also poor, and commercial transplantation is prohibited which would
open the system to abuse poorer donors. While this model has
been successful at eliminating the waiting list in Iran, implementing
these changes in the UK for ethical purposes would be challenging.
Reimbursing any expenses from donation is recommended by the
WHO and currently takes place in the UK10.  
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Methods to improve familial consent rates
in a clinical setting
One of the greatest challenges facing organ shortages is relative
consent rates where medical professionals ask for consent. Over 4
in 10 families in the UK refuse consent for organ donation, one of
the highest rates world-wide, and improving this rate is seen as
imperative to shortening the waiting list in Scotland1.  
 
Studies have examined factors which influence rates of donation. A
qualitative study by Sanner found that only physicians with a prodonation approach to organ donation were able to achieve
consent2. This study had a novel method combining both narratives
of relatives and physicians which was particularly strong, however, a
small sample size may make it unrepresentative.  This was
consistent with a larger study by Djong et. al. which showed that if
the benefits of organ donation were made aware to families (prodonation), a much higher rate of consent was achieved (68 to
92%)3. Other studies4,5 showed that higher rates of consent were
achieved when relatives felt they were given enough information.
However, these studies may have had a confounding factor; where
consent was refused, it would be unlikely for further information to
be given.  
 
Sanner also found that a non-donation response was a ‘nondecision’ – a way of avoiding having to make a decision in a time of
grief2. Another qualitative paper in 2014 concluded “inviting them
[relatives] to reconsider their initial refusal will lead to a more stable
decision6.” Other studies followed similar themes with
consent rates being significantly increased if death and organ
donation are decoupled3,7,8,9. All these studies were retrospective
and observational so they are unable to find causative data, only
associations. The study by Niles et al. had particularly interesting
results, showing consent rates were highest (62%) if the family was
asked before death, as opposed to at the time of
death (25%). Ensuring donation is requested at the correct time and
inviting patients to reconsider a no-response should improve
consent rates.  
 
Ensuring brain stem criteria of death is understood by relatives is
essential for achieving high rates of consent as found
by DeJong, Rodrigue and Jenkins with increases of 20%, 31% and
27% respectively when comparing families who understood brain
death compared to those who didn’t3,6,10. Once again all three were
retrospective but all methods of the studies were rigorous with
medium sample sizes.
 
Lastly, the person who asks for consent greatly influences the
refusal rate, particularly their training level. A Norwegian study
found a severe deficit in training in especially with communication
with over half reporting difficulty relating to relatives. Many also
failed to adhere to recommended practice which led to lower
consent rates11. In the UK the only form of training given is a DVD.
A further study of 1,137 relatives found that when trained organ
procurement specialists approached relatives there was a 69%
consent rate compared to a physician consent rate of
49%12. Introducing a Specialist Nurse for Organ Donation (SNOD) with relevant training would improve consent rates. The study
also showed that use of translators reduced the consent rate, but a
confounding factor (ethnic minorities are less likely to donate) may
explain this.
 
In conclusion, ensuring doctors asking for consent have a prodonation attitude, who are highly trained in obtaining consent would
improve consent rates. Training should be given on how to
approach relatives decoupling the death and organ donation, giving
adequate information to relatives of patients about brain stem death
and ensuring enough time is given to relatives to come to a
decision. We would also recommend allowing patients to reconsider
their decision (avoiding the premature ‘No’) and the introduction of
a SN-OD in every hospital so potential donors are not missed.
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Variation in rates of organ donation
between different ethnic groups and how
they could be improved
In the UK, it is estimated that 10.8% of the population are from
Black, Asian and Minority Ethnic (BAME) communities1.
However, they represent 27% of those on the waiting list and only
5% of organ donors2. The under-representation of organ donors is
partly due to higher refusal rates when consent is required for
relative’s organs – 66% among BAME families compared to 43% for
the rest of the population3. Variation in organ donation is further
highlighted by a large prospective cohort study in the UK which
found that white patients who died in a critical care setting were
more than 5 times more likely to become kidney donors than Asian
patients4.   
 
The reason for these differences is not due to one specific barrier
but rather due to wider negative attitudes to organ donation caused
by multiple problems. These include: distrust (for example worries
that the organs may be used for medical research), the feeling that
registering as a donor is like ‘tempting fate’, concern that medical
teams will not try as hard to save their life, and many others 5,6. While
these concerns are significantly greater among ethnic minorities,
they are also expressed to a lesser degree by the White
population5. Therefore addressing these barriers would increase
donation rates across all ethnic groups. However, it is important to
note that one of the studies cited (5) was conducted in South
London – an ethnically mixed area with high levels of social
disadvantage and unemployment. This is a possible source of
confounding as there is evidence suggesting that the negative
attitudes of disadvantaged ethnic minorities are a result of feelings
of marginalisation and lack of belonging7,8. In areas such as South
London it may therefore be necessary to address these underlying
feelings alongside the issues that have been identified such as
trust.   
 
Interestingly, a common barrier to organ donation among ethnic
minorities is the feeling that it is against their religion5. This is
despite the fact that there are no religious faiths which
object completely to organ donation, but rather see it as an
individual choice9,10. This means that with suitable interventions and
work at the local level within the community, it should be possible to
eliminate any variations in organ donation which are due to
religion.   
 
Lastly, there have been many studies which have found ethnic
minorities to be significantly less willing to discuss organ donation
with family members5,11. Discussion within the family is very
important as family consent rates are much higher when a
preference for organ donation is known12,13. This may partly explain
the higher refusal rates in BAME families as discussed previously.   
 
In conclusion, the lower donation rates among BAME communities
are a result of many different issues and not one major barrier.
Reflecting this, while there may be no one easy solution, each issue
could be addressed individually. For example, encouraging family
discussion to reduce refusal rates or engaging people in the
community to help reduce feelings of marginalisation are simple
measures which could have big impacts. Furthermore, staff
requesting organ donation must be familiar with different cultural
and religious views regarding death so that they can more
appropriately approach discussion with families and thus increase
consent rates14. Almost all of the barriers which affect ethnic
minorities also affect the White population and so addressing them
will be beneficial in increasing organ donation rates across all ethnic
groups.   
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Methods of kidney paired donation
Kidney paired donation (KPD) is a promising area for maximising
the number of kidney transplants from living donors and reducing
waiting lists. The predicted success of implementing KPD is
influenced by factors including the organ pool size, geography, and
further logistics. As a result, investigation into the practicalities of
participating in KPD and whether it can be applied in Scotland is
necessary.  
 
The main methods of KPD are paired exchanges, domino-paired
donation (DPD), and non-simultaneous extended altruistic donor
(NEAD) chains. Paired exchange is the simplest method. Two
incompatible pairs are invited to exchange organs, with
donor A donating to recipient B and vice versa1. It allows patients
who have a willing but incompatible donor a shorter waiting time
and a guaranteed living donor transplant (LDT)2. The practicality of
paired exchange is influenced by geographical barriers. In many
situations both pairs will live in different locations and asking donors
to travel to recipients’ transplant centres would impose financial and
social difficulties3. Another option is to transport the kidney.
Simpkins et al researched the effect of cold ischaemic time (CIT) on
the outcome of LDTs via a retrospective cohort study of 56,341
recipients. A 4.3% increase was seen in DGF but no significant
impact was found on long-term outcomes with CITs <8 hours4. The
study’s reliability was increased by using a large sample to
minimise chance. However, confounding may influence the results
due to use of different surgical procedures, which
could affect transplant outcomes.
 
In DPD a non-directed donor (NDD) donates a kidney to an
incompatible pair. The donor of the first pair goes on to donate to
another incompatible pair or a patient on the waiting list1. Thus at
least two transplants can be achieved through one altruistic donor’s
gift. A study found, on average, a 20% increase in the number of
transplants facilitated when NDDs participated in DPD/NEAD
chains, compared to NDDs donating to patients on the deceased
donor waiting list5. A mathematical model was used with
simulated rather than actual donor-recipient data which
reduced validity. Although taking into account factors including
varying rates of reneging when analysing the results does improve
its reliability.
Diagram illustrating the steps of domino paired donation (DPD)
NEAD chains are similar to DPD but occur on a larger scale,
facilitating more transplants. A chain is initiated by a NDD donating
to an incompatible pair, there is no donating to the waiting
list. Therefore, the chain can expand exponentially. In contrast to
the previous methods the transplants are not carried out
simultaneously, instead chains take place as matches are found.
The final donor in the chain is reserved as a ‘bridge donor’ to restart
the chain at a later date rather than donating to the waiting list, as in
DPD1. This introduces a greater risk of reneging as the bridge donor
may not be contacted to donate their organ for months after the
other half of their pair has received a transplant5.
 
In 2012 the UK created a National Living Donor Kidney Sharing
Scheme. Within this scheme paired exchanges and DPDs are
performed. Compatible pairs seeking an improved match are also
eligible to participate. Matching runs are carried out quarterly to
detect possible exchanges amongst registered candidates. During
2013-2014, 10 paired exchanges took place in Scotland and 62 in
the rest of the UK. An increase from 4 and 51 respectively in 201220136. Research has shown that larger pool sizes correlate with
increased transplant rates and improved matches7. Therefore,
national KPD programs are estimated to be more beneficial than
single-centre schemes. Eurotransplant is the organisation which
coordinates the allocation of organs in eight European
countries, excluding the UK8. Consequently, the pool size is
expanded leading to more transplants. Scotland could benefit from
registering with Eurotransplant due to the limited population
size. At present, Eurotransplant only utilises deceased donors and
has potential to improve transplant rates by introducing KPD. For
example, the US launched a KPD Pilot Program (KPDPP) in 2010,
with 61% of US kidney transplant programs signing up. However,
the pool mainly consists of ‘hard-to-match’ pairs, including highlysensitised recipients9. For KPDPP to be successful, every US
transplant program must participate and be willing to register all of
their incompatible pairs, not only those who are ‘hard-to-match’.
 
In conclusion, the UK’s KPD program is still in the early stages of
development, but has great potential based on the success of
similar schemes in other countries. With appropriate planning and
infrastructure a European KPD scheme could be implemented.
Therefore, increasing the pool size to maximise the number of
LDTs, improve quality of matches, and decrease waiting times.
< Previous
Next>
Conclusion
Many ideas have been explored throughout this literature analysis
of different methods to reduce waiting times for kidney
transplantation. Some ideas have been extremely successful in
their unique healthcare setting, such as in Iran where people are
paid for their organs1 . There are many ethical and moral issues that
mean that it would be challenging to implement this method within
Scotland although reimbursement of medical expenses should be to
reduce economic barriers to patients receiving a
transplant. Providing training for medical professionals or creating a
specific role within the NHS, such as transplant coordinators used
in Spain2, would enable an empathetic approach providing clear
explanations to families with relatives who could possibly become
donors. This training could also be applicable to living donors and
with our increasing understanding of the effects of living donation to
the donor, medical professionals can provide accurate and reliable
information helping the potential donor to make an informed
decision3. Both of these methods would help to increase the number
of available kidneys, subsequently reducing the waiting list by
increasing familial consent rates for deceased donors and
increasing the number of living donors. Training should also
address the different approaches of cultural and religious groups to
death, which would help medical professionals, reassure these
groups and gain consent4. An opt-out rather than the current opt-in
system may seem like a quick fix, however, without the appropriate
training of professionals and changing the current perceptions
about organ donation within the public this would ultimately be
unsuccessful.    
 
Kidney paired donation allows for the utilisation of willing but
incompatible donors, such as in the situation where a family
member wants to donate to a relative but is not a match6. Looking to
join a larger paired donation network could increase the likelihood
of people receiving transplants. This may be difficult to create on a
large scale7, due to geographical restrictions8, but the concept
should be explored. 
 
Adequate matching of a kidney’s Kidney Donor Profile Index to a
recipient’s Estimated-Post Transplant Survival score could
maximise the use of each kidney, which would reduce the rate of
recipients returning to the waiting list, which has begun to be used
within the USA9. A possible area we could have examined is ways
in which to prevent graft failure once the kidneys has been
transplanted. Clinical medicine is still continuing to understand what
causes graft failure within recipients9, so as our understanding
changes our approach will too change. Our project aimed to
establish changes to the system itself, which will hopefully create
changes on a permanent basis.
It would be beneficial for further prospective studies to be
conducted to explore various ways of obtaining consent to reduce
bias and confounding factors. This could allow for the creation of a
standardised and effective method of gaining consent from families.
The long term effects of having an extended criteria kidney could
also be further investigated as current studies have short-term
follow-ups.
 
Overall our project has demonstrated how contrasting countries
approaches are to kidney donation and transplantation,
emphasising how there is no single solution to this problem. By
instigating changes at a national, regional and hospital level then
the changes can be extensive and thorough. By using a
combination of several methods, a complete and holistic approach
to this issue can be created and this will aid in reducing the waiting
list for renal transplant within Scotland and the UK. 
<Previous
Contributions
Michael Bennett researched the current model of organ donation in
Scotland and statistics relating to the current state. He also wrote
the introduction and conclusion. He further organised the critical
appraisal.
Alisha Khanna researched current criteria for kidney donation,
particularly for kidneys from deceased donors. She wrote the
section on criteria for deceased donor transplantation. She also
organised the meetings with our tutor on behalf of the group.
Mark McBrien researched KDPI. He wrote the section on Matching
kidneys’ predicted graft survival rates to patients’ predicted survival
rates. He further compiled everyone's pages and was involved in
formatting the webpage and the word version appendix.
Sarah Atkinson wrote the section on living kidney donation. She
researched living kidney donation and factors that effect the
outcomes of livedonor kidney transplantation on donors and
recipients.
Jordan Fitzpatrick researched models of organ donation and
collaborated with Nicklas Brown in writing the Models section. He
further researched and wrote about reasons Ethnic minorities are
less likely to be donors. He also verified copyright permission for
and inserted the bar graph in the introduction.
Nicklas Brown researched models of organ donation and
collaborated with Jordan Fitzpatrick in writing the Models section.
He further researched and wrote about methods to improve consent
rates in a clinical setting. He organised the contributions page and
the search report.
Sarah Jack researched kidney paired donation and living donor
pools. She wrote about ways these could be implemented in the UK
and Scotland. Sarah also produced a diagram explaining domino
paired donation.
Critical Appraisal>
Critical Appraisal
In the past examination of the risk to living kidney donors of
developing End-Stage Renal Disease (ESRD) has been examined
against the risk to the general population. The general population
offers an unsuitable comparison as they are unscreened and many
morbidities are present which make them unable to donate. This
study aims to compare the risk of ESRD in those which have
donated against those that could have donated but did not.
The cohort study used a sample of 96,217 Kidney donors; every
live kidney donor from 1994-2011 in the USA. The non-donors were
selected from Third National Health and Nutrition Examination
Survey (NHANES III), of which there were 9,364 participants that
had no contraindications to living kidney donation and could have
been live kidney donors. The large sample size makes the results
arising by chance less likely. Using every kidney donor in the USA
from 1994-2011 makes it representative of the entire population.
The study used statistical analysis with significant p values and
95% confidence intervals, acknowledging chance could exist.
The NHANES lll study was carried out from 1988-1994. It is possible
that non-donors might experience a higher rate of ESRD if taken
from a modern sample, as the general rate of ESRD has increased
since this survey. It could be argued, however, that this rate is
within the general population. As this cohort is considered to be
healthier than the general population it is quite possible that the
relative risk has not increased, making this survey and these people
still applicable.
Those that donated kidneys, at the time of donation, had a higher
BMI, systolic blood pressure and the chance of them being smokers
was twice as likely. This could lead to confounding, as these factors
are associated with an increased risk of developing ESRD. The
majority of the cases where ESRD developed in donors occurred in
transplants between relatives. The cause of ESRD in the donors
and non-donors is absent in this study. If the cause is
immunological, then there is a possibility of a genetic factor which
would lead to a greater predisposition to developing ESRD and
once again confounding.
A wide range of clinical variables were taken into account and each
cohort was matched by age, sex, race, educational status, BMI,
blood pressure and smoking history. This reduces the risk of
confounding and allows for a causal link to be established.
The study followed each group for a maximum of 15 years. A longer
follow up period would allow for a more comprehensive
understanding of the long term prognosis, although 15 years gives
a good idea of problems. In younger donors the issues that arise
after the follow up period may not be seen until many years
afterwards.
The large sample sizes allows for more confident inferences to be
made, especially that surrounding race and ethnicity. It also allows
for the production of an estimated lifetime risk for ESRD for donors
and non-donors.
Overall this report is of good scientific quality despite issues of
confounding, bias and chance addressed earlier. The study has a
large sample size which is taken from across the USA, making it
very representative and useful within this area, although it may not
be applicable to other nations due to cultural and healthcare
differences. Continuing to monitor these populations will help to
ascertain more accurate results. This study offers improvements
over past studies as it uses a better comparison than the
unscreened general population and reaffirms existing knowledge.
This allows for doctors to give evidence-based information to
patients which will importantly aid in informed decision making.
< Contributions
Information Search Report>
Information Search Report
Recognising the information gap: After our initial meeting we
individually researched an area involved with kidney donation and
fed back to the group our research in that given area. In addition we
received papers by our tutors which helped us direct our searches.
This allowed us to gauge the literature depth and breadth in various
areas of organ donation.
Distinguishing ways of addressing the information gap: We initially
used google scholar and review articles to find research papers.
This allowed us to form the areas which we wished to develop
further which led to the titles of our main sections based on what
was missing in the UK with organ donation.
Constructing strategies for locating the information: Having
established the 7 topic areas we wished to research we used
bibliographic databases (e.g. PubMed) to search for relevant
literature on our chosen topics. Using keywords related to the
respective sections and using AND or OR, let us narrow down our
searches to relevant information.
Locating and accessing the information: Often databases such as
PubMed only provided abstracts to papers. Using institutional
access we followed links to other sites with full papers on them.
Otherwise using Edinburgh University library we were able to find
most papers. Most members of the group used Mendeley to save
relevant PDF files they had found for future reference and for
writing their sections.
< Critical Appraisal
References>
References
Introduction
1. National Health Service Scotland, Scottish Renal Registry Report
2013 (2013). http://www.srr.scot.nhs.uk/Publications/PDF/scottishrenal-registry-report-2013-web.pdf?2 (Online Publication).

This publication used data from all kidney transplants in Scotland
from 1960, which allows the data collected to be both
comprehensive and representative of Scotland.
2. Davis A, Mehrotra S, McElroy L, Friedewald J, Skaro A, Lapin B,
Kang R, Holl J, Abecassis M and Ladner D. (2014). The Extent and
Predictors of Waiting Time Geographic Disparity in Kidney
Transplantation in the United States. Transplantation, 97(10),
pp.1049--1057. (Journal article)
3. Organizacion Nacional de Transplantes, Newsletter TransplantInternational figures on donation and transplant.
(2014). http://www.ont.es/publicaciones/Documents/NEWSLETTER
%202014.pdf (Online Publication)
4. Gentry, S., Montgomery, R., Swihart, B. and Segev, D. (2009).
The roles of dominos and nonsimultaneous chains in kidney paired
donation. American Journal of Transplantation, 9(6), pp.1330-1336. (Journal article)
5. Karam, G., Kalble, T., Alcaraz, A., Aki, F., Budde, K., Humke, U.,
Kleinclauss, F., Nicita, G., Olsburgh, J. and Susal, C. (2012).
Guidelines on renal transplantation. EAU guidelines.
http://www.uroweb.org/gls/pdf/Renal%20Transplantation%202010.
pdf (Online Publication).
Criteria involved in kidney transplantation from  deceased 
donors
1. Panduranga SR, Akinlolu O. The alphabet soup of kidney
transplantation: SCD, DCD, ECD—fundamentals for the practicing
nephrologist. Clinical Journal of the American Society of
Nephrology. 2009: 4(11) 1827-1831.
http://cjasn.asnjournals.org/content/4/11/1827.long (Review Article)

Provides an excellent background to the terminology in renal
transplant and general implications of kidney quality on clinical
outcome
2. NHS organ donation. Section 5 - Kidney Activity Activity Report
2013-2014. 2014: 29-
31 http://www.organdonation.nhs.uk/statistics/transplant_activity_re
port/current_activity_reports/ukt/activity_report_2013_14.pdf. (Onlin
e Publication)
3. Karam G, Kalble T, Alcaraz A, Aki F, Budde K, Humke U,
Kleinclauss F, Nicita G, Olsburgh J, Susal C. (2013) Guidelines on
renal transplantation. Arnhem, the Netherlands: European
Association of Urology (EAU) 2013: 2943.http://www.uroweb.org/fileadmin/tx_eauguidelines/2009/Full/Ren
al_Transplant.pdf (Online publication)
4. Callaghan CJ, Harper SJF, Saeb-Parsy K, Hudson A, Gibbs
P, Watson CJE, Praseedom RK, Butler AJ, Pettigrew GJ, Bradley
JA The discard of deceased donor kidneys in the UK. Clinical
Transplantation 2014: 28(3) 345-353
http://onlinelibrary.wiley.com.ezproxy.is.ed.ac.uk/doi/10.1111/ctr.12
319/full. (Journal article)
5. Chavalitdhamrong D, Jagbir G, Steve, T, Bhaskara RM, Yong
WC, Tariq S, Suphamai B. Patient and graft outcomes from
deceased kidney donors age 70 years and older: an analysis of the
Organ Procurement Transplant Network/United Network of Organ
Sharing database. Transplantation 2008: 85(11) 15731579. http://ovidsp.tx.ovid.com/sp3.13.1a/ovidweb.cgi?T=JS&PAGE=fulltext&D=ovft&AN=00007890200806150-00016&NEWS=N&CSC=Y&CHANNEL=PubMed.
(Primary Research Article)
6. Giessing M, Fuller TF, Friedersdorff F, Deger S, Wille A,
Neumayer H, Schmidt D, Budde K, and Liefeldt L. Outcomes of
transplanting deceased-donor kidneys between elderly donors and
recipients. Journal of the American Society of Nephrology. 2009:
20(1) 37-40. (Primary Research Article)
7. Mgbako O, Glazier A. Blumberg E, Reese PP. Allowing
HIV‐Positive Organ Donation: Ethical, Legal and Operational
Considerations. American Journal of Transplantation. 2013: 13(7)
1636-1642. (Review Article)
8. Muller E, Kahn D, Mendelson MD, Renal Transplantation
between HIV-Positive Donors and Recipients. The New England
Journal of Medicine 2010: 362(24) 2336-2337 (Journal Article)
9. Hwang JK, Park SC, Kwon KH, Choi BS, Kim JI, Yang CW, Kim
YS, Moon IS. Long-Term Outcomes of Kidney Transplantation
From Expanded Criteria Deceased Donors at a Single Center:
Comparison With Standard Criteria Deceased Donors.
Transplantation proceedings. Elsevier, 2014: 46(2) http://ac.elscdn.com.ezproxy.is.ed.ac.uk/S004113451301275X/1-s2.0S004113451301275X-main.pdf?_tid=fda372f0-6d5c-11e4-90fb00000aacb35e&acdnat=1416120868_6b6cdf389fb3bb89605cfa47c
8c9c16c. (Primary Research Article)

31 grafts from ECDs and 164 grafts from SCDs were followed,
good follow up period (10 year) but the study was conducted at a
single centre so it may not be widely representative.
Matching kidneys’ predicted graft survival rates to patients’
predicted survival rates to reduce the kidney transplant waiting
list
1. Ojo AO, Hanson JA, Wolfe RA, Leichtman AB, Agodoa LY, Port
FK. Long-term survival in renal transplant recipients with graft
function. Kidney Int. International Society of Nephrology; 2000
Jan;57(1):307–13. http://dx.doi.org/10.1046/j.15231755.2000.00816.x (Primary Research Article)
2. Rao PS, Schaubel DE, Guidinger MK, Andreoni KA, Wolfe RA,
Merion RM, et al. A comprehensive risk quantification score for
deceased donor kidneys: the kidney donor risk index.
Transplantation. 2009 Jul 27 ;88(2):231–
6. http://www.ncbi.nlm.nih.gov/pubmed/19623019 (Primary
Research Article)

A large study of 69,440 donor transplants adequately assessing
the factors that influence death or graft failure.
3. Lee APK, Abramowicz D. Is the Kidney Donor Risk Index a step
forward in the assessment of deceased donor kidney quality?
Nephrol Dial Transplant . 2014 Oct 4 ;0:16. http://ndt.oxfordjournals.org/content/early/2014/10/04/ndt.gfu304.l
ong?hwshib2=authn:1414580318:20141028%3A74f8c73b-2a2b46e2-bc8933cb993419d9:0:0:0:DfqFLUt7rHIQ9u3XI7Hc+w== (review article)

A useful review article summarising the use of KDPI and EPTS.
4. Israni AK, Salkowski N, Gustafson S, Snyder JJ, Friedewald JJ,
Formica RN, et al. New national allocation policy for deceased
donor kidneys in the United States and possible effect on patient
outcomes. J Am SocNephrol . 2014 Aug 15; 25(8):1842–
8. http://www.srtr.org/publications/pdf/Israni_New_national_allocatio
n_policy_for_deceased_donor_kidneys_Online.pdf (primary
research article)

A study simulating the benefits of using KDPI in conjunction with
the EPTS.
Living kidney donor criteria  
1. NHS: Blood and Transplant. (2014) Kidney Activity- Organ
Donation. http://www.odt.nhs.uk/pdf/LKDT_2020_strategy.pdf (NHS
Strategy Summary)
2. Montgomery R, Lonze B, King K, Kraus E, Kucirka L, Locke J et
al. Desensitization in HLA-Incompatible Kidney Recipients and
Survival. New England Journal of Medicine. 2011;365(4):318326. http://www.nejm.org.ezproxy.is.ed.ac.uk/doi/full/10.1056/NEJM
oa1012376 (Primary Research Article)

A single-centre study evaluating rates of survival after LKDT in
211 consecutive patients with donor-specific anti-HLA antibody
after undergoing desensitisation compared with matched control
subjects on a kidney-transplant waiting list. A standardised
protocol was used. Baseline characteristics of patients were
skewed. The study has a short follow up time.
3. Montgomery J, Berger J, Warren D, James N, Montgomery R,
Segev D. Outcomes of ABO-Incompatible Kidney Transplantation in
the United States. Transplantation.
2012; http://ovidsp.tx.ovid.com.ezproxy.is.ed.ac.uk/sp3.13.1a/ovidweb.cgi?&S=ABAIFPGNIBDDOININCLKOCIBEEJGAA
00&Link+Set=S.sh.27%7c1%7csl_10 (Primary Research Article)

A retrospective US study comparing patients who underwent
live-donor ABO incompatible transplantation with ABO
compatible-matched controls. A large population is used
however confounding may be present due to characteristics not
measured.
4. Krishnamurthi V. Risk of End-Stage Renal Disease Following
Live Kidney Donation. Yearbook of Urology. 2014;2014:1921. http://jama.jamanetwork.com/article.aspx?articleid=1829682 (Pr
imary Research Article)

A prospective cohort study in US, comparing the risk of endstage renal disease in kidney donors with matched healthy nondonors at an equally low risk of renal disease. Large sample
sizes were used and clinical and demographic variables were
considered. Follow up time may have limited the understanding
of the effects on ESRD and secular trends may have attributed
to the results.
5. Mjøen G, Hallan S, Hartmann A, Foss A, Midtvedt K, Øyen O et
al. Long-term risks for kidney donors. Kidney International.
2013;86(1):162-167.
http://www.nature.com.ezproxy.is.ed.ac.uk/ki/journal/v86/n1/full/ki2
013460a.html(Primary Research Article)

A single centre prospective cohort study in Norway with a long
follow up time and large cohorts compared the long-term allcause mortality, cardiovascular mortality, and risk for ESRD in
kidney donors with a selected control group screened for
eligibility for live-kidney donation. No donors were lost to follow
up. There was missing data on confounding factors.
6. Garg A, Nevis I, McArthur E, Sontrop J, Koval J, Lam N et al.
Gestational Hypertension and Preeclampsia in Living Kidney
Donors. N Engl J Med 2011; 365:318326 http://www.nejm.org/doi/full/10.1056/NEJMoa1408932 (Primary
Research Article)

A retrospective, matched-cohort study in Canada compared the
risk of gestational hypertension and preeclampsia in living kidney
donors and non-donors. high level of health surveillance was
used for both cohorts. Data for some confounding factors
including racial information were not considered.
7. Frade I, Fonseca I, Dias L, Henriques A, Martins L, Santos J et
al. Impact Assessment in Living Kidney Donation: Psychosocial
Aspects in the Donor. Transplantation Proceedings.
2008;40(3):677681. http://www.sciencedirect.com.ezproxy.is.ed.ac.uk/science/articl
e/pii/S0041134508001450 (Primary Research Article)
8. Segev D. Innovative strategies in living donor kidney
transplantation. Nat Rev Nephrol. 2012;8(6):332-338.
http://www.nature.com.ezproxy.is.ed.ac.uk/nrneph/journal/v8/n6/full/
nrneph.2012.82.html (Review)
9. Fan X, Lin T, Xu K, Yin Z, Huang H, Dong W et al.
Laparoendoscopic Single-Site Nephrectomy Compared with
Conventional Laparoscopic Nephrectomy: A Systematic Review
and Meta-analysis of Comparative Studies. European Urology.
2012;62(4):601612. http://www.sciencedirect.com.ezproxy.is.ed.ac.uk/science/articl
e/pii/S0302283812006392 (As reviewed in Clayman RV1, Kavoussi
LR, Figenshau RA, Chandhoke PS, Albala DM. Laparoscopic
nephroureterectomy: initial clinical case report. 1991 Dec;1(6):34310. Canes D, Berger A, Aron M, Brandina R, Goldfarb D, Shoskes
D et al. Laparo-Endoscopic Single Site (LESS) versus Standard
Laparoscopic Left Donor Nephrectomy: Matched-pair Comparison.
European Urology. 2010;57(1):95101. http://www.sciencedirect.com.ezproxy.is.ed.ac.uk/science/articl
e/pii/S0302283809007702 (Primary Research Article)

A retrospective matched-pair comparison study compared the
convalescence in living donors for LESS-DN and LLDN. Baseline
demographics were comparable between groups used. Small
sample sizes of cohorts within a short time frame were selected.
Models of organ donation
*N.B for this section, it was particularly hard to find relevant and
recent primary research articles as the majority of papers were
simply reviewing models"
1. Organ Donation and Transplantation. NHS: Blood and
Transplant. 2014.
http://www.organdonation.nhs.uk/statistics/transplant_activity_repor
t/current_activity_reports/ukt/activity_report_2013_14.pdf (Report)
2. Organizacion Nacional de Transplantes, Newsletter TransplantInternational figures on donation and transplant.
(2014). http://www.ont.es/publicaciones/Documents/NEWSLETTER
%202014.pdf (Online Publication)
3. Matesanz R, Dominguez-Gil B. Strategies to optimize deceased
organ donation. 2007. Transplantation Reviews. 21(4), pp.177188. doi:10.1016/j.trre.2007.07.005 (Review)

A good review of the Spanish model which highlights and
discusses the success of the integrated approach taken by
Spain.
4. The potential impact of an opt out system for organ donation in
the UK. UK Organ Donation Taskforce.
2008. http://www.odt.nhs.uk/pdf/the-potential-impact-of-an-opt-outsystem-for-organ-donation-in-the-UK.pdf (Report)
5. Taking Organ Transplantation to 2020; A detailed strategy. NHS:
Blood and Transplant.
2013. http://www.nhsbt.nhs.uk/to2020/resources/nhsbt_organ_dono
r_strategy_long.pdf (NHS Strategy Summary)
6. Organ Donation Consultation. Royal College of Nursing.
2009. http://www.nhsbt.nhs.uk/to2020/resources/nhsbt_organ_dono
r_strategy_long.pdf (Policy Briefing)
7. Traino HM, Alolod GP, Shafer T, Siminoff LA. Interim Results of a
National Test of the Rapid Assessment of Hospital Procurement
Barriers in Donation (RAPiD). Am J Transplant. 2012; 12: 3094–
3103. doi: 10.1111/j.1600-6143.2012.04220.x (Primary Research
Article)
8. Abadie A, Gay S. The impact of presumed consent legislation on
cadaveric organ donation: a cross-country study. J Health Econ.
2006; 25:
599. http://www.sciencedirect.com/science/article/pii/S0167629606
00004X (Primary Research Article)
9. Ghods AJ, Savaj S. Iranian model of paid and regulated livingunrelated kidney donation. Clinical Journal of the American Society
of Nephrology. Clin J Am Soc Nephrol. 2006 Nov;1(6):113645. http://cjasn.asnjournals.org/content/1/6/1136.full (Review)

A good review but it could be biased as one of the authors, Ajad
J. Ghods, helped to develop the model for Iran.
10. Rudge C, Matesanz R, Delmonico F, Chapman J. International
practices of organ donation. BJA. 2011; 108: pp.i48-i55.
http://bja.oxfordjournals.org/content/108/suppl_1/i48.full (Review)
Methods to Improve familial consent rates in a clinical setting 
1. NHS: Blood and Transplant. (2013) Taking organ transplantation
to 2020; A detailed strategy.
http://www.nhsbt.nhs.uk/…/nhsbt_organ_donor_strategy_long.pdf
(Accessed 22/11/14) (NHS Strategy Summary)
2. Sanner MA. Two perspectives on organ donation: experiences of
potential donor families and intensive care physicians of the same
event. (2007) J Critical Care. 2007;22:296–
304 http://www.ncbi.nlm.nih.gov/pubmed/18086400 (Primary
Research article)

This article was most effective at demonstrating the effects of the
approach of doctors to consent rate, particularly with respect to
pro-donation attitudes. It had a novel qualitative methodology
combining interviews of physicians with relatives to produce
narratives. However there was a relatively small sample size.
3. DeJong W., Franz H.G., Wolfe S.M., Nathan H., Payne D.,
Reitma W. & Beasley C. (1998) Requesting organ donation: an
interview study of donor and nondonor families. American Journal
of Critical Care 7(1), 13–
23 http://www.ncbi.nlm.nih.gov/pubmed/9429679 (Primary research
Article – Abstract only. Could not access article)
4. Rodrigue JR, Cornell DL, Howard RJ (2006) Organ donation
decision: Comparison of donor and non-donor families. Am J
Transplant 6: 190–
8 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365918/ (Primary
Research Article)

Good qualitative article with a multifactorial approach to asking
for consent. Large sample size and interviews conducted soon
after death which was not the case in many other papers.
5. Siminoff LA, Lawrence RH (2002) Knowing patients' preferences
about organ donation: does it make a difference? Journal of
Trauma-Injury Infection & Critical Care 53: 754-60. (As reviewed in Simpkin AL, Robertson LC, Barber VS, Young JD. Modifiable
factors influencing relatives’ decision to offer organ donation:
systematic review. BMJ.
2009;338:b991. http://www.ncbi.nlm.nih.gov/pubmed/19383730)
6. Groot J, Vernooij-Dassen M, Vries A, Hoedemaekers C, Hoitsma
A, Smeets W, van Leeuwen (2014) E. Intensive care staff, the
donation request and relatives’ satisfaction with the decision: a
focus group study. BMC Anesthesiology 2014,
14:52 http://www.biomedcentral.com/1471-2253/14/52 (Primary
Research Article)

Small study with focus groups had interesting results. It talked
about the experience from families and then drew conclusions on
their emotional response to improve consent rates)
7. Niles PA, Mattice BJ (1996) The timing factor in the consent
process. Journal of Transplant Coordination 6: 84–
7 http://natco.metapress.com/content/r51w123x42715130/ (Primary
Research Article - abstract only)

Medium sized study with which demonstrated large falls of
consent when death and organ donation were coupled
8. Gortmaker SL, Beasley CL, Sheehy E, Lucas BA, Brigham LE,
Grenvik A. et al. (1998) Improving the request process to increase
family consent for organ donation. J Transpl Coord. 1998;8(4):210–
217. http://www.bumc.bu.edu/len/files/2009/03/improving-therequest-process-to-increase-family-consent-for-organ-donation1998.pdf (Primary Research Article)

Large retrospecitive study which focused on decoupling and the
role of a coordinator in the request process.
9. von Pohle W, Linda L. (1996) Obtaining organ donation: Who
should ask. Heart Lung. 1996;25:304–
9. http://www.ncbi.nlm.nih.gov/pubmed/8836746 (Abstract – Full
text not available)
10. Jenkins, Donald H; Reilly, PM; Shapiro, MB; Russell, MW;
Frankel, HL; Lee, SY; Hawthorne, RV; Alavi, A; Schwab, CW.
(1998)Effect of Rapid Brain Death Determination on Organ
Donation Rates: A preliminary Report. Critical Care Medicine:
January 1998 - Volume 26 - Issue 1 - p 31A (As reviewed in
Simpkin AL, Robertson LC, Barber VS, Young JD. Modifiable
factors influencing relatives’ decision to offer organ donation:
systematic review. BMJ. 2009;338:b991.
http://www.ncbi.nlm.nih.gov/pubmed/19383730)
11. Eide H, Foss S, Sanner M, Mathisen JR. (2012) Organ donation
and Norwegian doctors' need for training. Tidsskr Nor Laegeforen
2012;132:1235-8. http://tidsskriftet.no/article/2271448 (Primary
Research Article)

Large questionnaire based study. Found that many doctors lack
sufficient training and that doctors should keep to standard
practice when asking for consent.
12. Ebadat A, Brown CV, Ali S et al (2014) Improving organ
donation rates by modifying the family approach process. J Trauma
Acute Care Surg 76(6):1473–1475 http://www.cedarssinai.edu/Patients/Programs-and-Services/Surgery/SurgicalEducational-Programs/Documents/SICU-Articles/Improving-organdonation-rates.pdf (Primary Research Article)

Large retrospective study with a very large multi-factorial
approach to asking consent. Very good article.
Reasons behind the variation in rates of organ donation
between different ethnic groups and how to improve them
1. Black, Asian and Minority Ethnic Organ Donation and
Transplantation data. NBTA. 2013 July. http://www.nbtauk.org.uk/wp-content/uploads/2013/08/NBTA-Organ-data-reportupdate-July-2013.pdf (Report)
2. Taking Organ Transplantation to 2020; A detailed strategy. NHS:
Blood and Transplant.
2013. http://www.nhsbt.nhs.uk/to2020/resources/nhsbt_organ_dono
r_strategy_long.pdf (NHS Strategy Summary)
3. NHSBT. Black, Asian and Minority Ethnic
communities. http://www.organdonation.nhs.uk/how_to_become_a_
donor/black_and_other_minority_ethnic_communities/ (Webpage)
4. Summers DM, Johnson RJ, Hudson AJ, Collett D, Murphy P,
Watson CJE, Neuberger JM, Bradley JA. Standardized deceased
donor kidney donation rates in the UK reveal marked regional
variation and highlight the potential for increasing kidney donation:
a prospective cohort study. Br J Anaesth. 2014; 113(1): 83–
90. doi:10.1093/bja/aet473 (Primary research article)

The findings of this recent paper are reliable as the study was
very large (27,482) and p-values were significant. This paper is
therefore useful in highlighting the clear influence of ethnicity on
organ donation.
5. Morgan M, Hooper R, Mayblin M, Jones R. Attitudes to kidney
donation and registering as a donor among ethnic groups in the UK.
J Public Health (Oxf). 2006; 28(3): 226–
34. http://jpubhealth.oxfordjournals.org/content/28/3/226.long (Prim
ary research article)

Relatively large study (1,606) and high participation rates
(however participation rates were significantly lower among
ethnic minorities, possibly skewing the data). The questionnaire
was adapted from previous studies and interviews meaning that
it was very relevant. While the data was adjusted was age, sex
and level of education, it could have been adjusted for more
factors to reduce the possibility of confounding.
6. Karim A, Jandu S, Sharif A. A survey of South Asian attitudes to
organ donation in the United Kingdom. Clin Transplant. 2013; 27(5),
757–63. doi:10.1111/ctr.12189 (Primary research article)
7. Morgan M, Adams OP, Seed PT, Jones R. Ethnicity and attitudes
to deceased kidney donation: a survey in Barbados and comparison
with Black Caribbean people in the United Kingdom. BMC Public
Health. 2010; 10,
266. http://www.biomedcentral.com/content/pdf/1471-2458-10266.pdf (Primary research article)
8. Morgan M, Mayblin M, Jones R. Ethnicity and registration as a
kidney donor: the significance of identity and belonging. Soc Sci
Med. 2008; 66(1): 14758. http://www.sciencedirect.com/science/article/pii/S02779536070
0456X (Primary research article)

A well conducted study which collected data from a small
number of participants through in-depth interviews. These
interviews were important in identifying deep and underlying
issues involving identity and belonging. Larger and less in-depth
studies would not have been as useful.
9. Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V.
“Opting-in or opting-out?”--the views of the UK’s faith leaders in
relation to organ donation. Health Policy (Amsterdam, Netherlands).
2010; 96(1): 36–
44. http://www.sciencedirect.com/science/article/pii/S01688510090
03364 (Primary research article)
10. Randhawa G, Brocklehurst A, Pateman R, Kinsella S, Parry V.
Religion and organ donation: the views of UK faith leaders. J Relig
Health. 2012; 51(3): 743751. http://link.springer.com/article/10.1007/s10943-010-93743?no-access=true (Primary research article)

Only 17 interviews but the paper is trying to assess the views of
‘UK faith leaders’ and gather views on organ donation from a
wide range of leading faith and belief organisations.
11. Morgan M, Kenten C, Deedat S. Attitudes to deceased organ
donation and registration as a donor among minority ethnic groups
in North America and the U.K.: a synthesis of quantitative and
qualitative research. Ethn Health. 2013; 18(4): 367–
90. doi:10.1080/13557858.2012.752073 (Review)

An extensive and useful review which synthesises information
from many different studies. These studies ranged significantly
e.g. 12 participants vs 6080 participants.
12. Sims JM, Kenten C, Deedat S, Randhawa G, Morgan M. Better
Health Briefing Paper 25, Overcoming barriers to registering as an
organ donor among minority ethnic groups. Race Equality
Foundation. 2012 November. http://better-
health.org.uk/sites/default/files/briefings/downloads/Overcoming%2
0barriers%20to%20registering%20as%20an%20organ%20donor%
20among%20minority%20ethnic%20groups_0.pdf (Review)
13. Hourigan CS. Registering organ donor preferences - a third
way? The British Journal of General Practice. 2005; 55(519):
805. http://bjgp.org/content/55/519/805 (Journal Article)
14. Randhawa, G. Death and organ donation: meeting the needs of
multiethnic and multifaith populations. Br J Anaesth. 2012; 108(S1):
i88i91. http://bja.oxfordjournals.org/content/108/suppl_1/i88.long (Revi
ew)
Methods of Kidney Paired Donation
1. Wallis CB, Samy KP, Roth AE, Rees MA. Kidney Paired
Donation. Nephrol Dial Transplant. 2011;26(7): 2091–
9. http://ndt.oxfordjournals.org.ezproxy.is.ed.ac.uk/content/26/7/209
1 (Journal Article)

An excellent article for establishing background knowledge;
explaining the methods of kidney paired donation and the
logistics of their implementation.
2. Segev DL, Gentry SE, Warren DS, Reeb B, Montgomery RA.
Kidney Paired Donation and Optimizing the Use of Live Donor
Organs. JAMA. American Medical Association; 2005;293(15):
1883–
90. http://jama.jamanetwork.com.ezproxy.is.ed.ac.uk/article.aspx?ar
ticleid=200729 (Primary Research Article)
3. Gentry SE, Montgomery RA, Segev DL. Kidney paired donation:
fundamentals, limitations, and expansions. Am J Kidney Dis.
2011;57(1): 144–51.
http://www.sciencedirect.com/science/article/pii/S02726386100143
93 (Primary Research Article)
4. Simpkins CE, Montgomery RA, Hawxby AM, Locke JE, Gentry
SE, Warren DS, et al. Cold ischemia time and allograft outcomes in
live donor renal transplantation: is live donor organ transport
feasible? Am J Transplant. 2007;7(1): 99–107.
http://www.ncbi.nlm.nih.gov/pubmed/17227561 (Primary Research
Article)

A retrospective cohort study with a large sample of 56,341 live
kidney transplant recipients, which found no negative long-term
effects on kidney outcomes with cold ischaemic times less than
eight hours.
5. Gentry SE, Montgomery RA, Swihart BJ, Segev DL. The roles of
dominos and nonsimultaneous chains in kidney paired donation.
Am J Transplant. 2009;9(6): 1330–6.
http://www.scopus.com/inward/record.url?eid=2-s2.066249109591&partnerID=tZOtx3y1 (Primary Research Article)

A mathematical model study researching participation of nondirected donors in dominos or chains as a way of expanding
kidney paired donation.
6. Statistics and Clinical Studies, NHS Blood and Transplant. Organ
Donation and Transplantation; Activity Report 2013/2014. 2014 p.
28-44.
http://www.organdonation.nhs.uk/statistics/transplant_activity_repo
rt/current_activity_reports/ukt/activity_report_2013_14.pdf (Report)
7. Gentry SE, Segev DL, Montgomery RA. A comparison of
populations served by kidney paired donation and list paired
donation. Am J Transplant. 2005;5(8):1914–21.
http://www.ncbi.nlm.nih.gov/pubmed/15996239 (Primary Research
Article)
8. Eurotransplant International Foundation. Annual Report 2013.
https://www.eurotransplant.org/cms/mediaobject.php?file=AR2013
5.pdf (Report)
9. OPTN/UNOS KPD Work Group. The State of the OPTN/UNOS
KPD Pilot Program. 2014.
http://optn.transplant.hrsa.gov/ContentDocuments/KPD_Report.pdf
(Report)
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