Open Journal of Nephrology, 2012, 2, 44-48 Published Online September 2012 (
Spouses Who Donate Seem to Be the Winners—
A Questionnaire Study of Kidney Donors Long-Term
Annette Lennerling1,2, Abdul Rashid Qureshi3, Ingela Fehrman-Ekholm1,4
1Transplant Institute, Sahlgrenska University Hospital, Gothenburg, Sweden
2Institute of Health and Care Sciences, University of Gothenburg, Gothenburg, Sweden
3Baxter Novum, CLINTEC, Karolinska Institute, Stockholm, Sweden
4Renal Department, Karolinska University Hospital, Stockholm, Sweden
Received August 8, 2012; revised September 10, 2012; accepted September 18, 2012
Background: Living donor kidney transplantations have been performed at Sahlgrenska University Hospital in Goth-
enburg, Sweden since 1965. In this study we wanted to explore th e living kidney donor ’s long-term experiences of the
donation. Methods: Of 1110 consecutive living dono rs thro ugh out 19 65 -2 005 , 823 w ere av ailab le fo r o ur question n aire
study. Results: Totally 692 replied to th e questionnaire, 65% were females. The most common relation to the recipien ts
was siblings (284), parents (262) and spouses (96). Time since donation was median 15 years (2 - 43). The initiativ e to
donate came from the donors themselves in 69%. The dominating motives for donation were a wish to help, worries
about the recipient not receiving a transplant and the knowledge that one could live a normal life with one kidney. The
majority of the donors, felt well informed about potential risk s both short-term and long-term. Depression post donatio n
was reported by few donors, 2.3% and persisting pain by 4.3%. Comparisons between sibling donors and spouse donors
show a significant differen ce (p < 0.0001) in the statements; If I donate a kidney “My quality of life will be better” and
“The quality of life for the family will be better” more so for spouses. Also spouses seemed to be better informed about
risks both for themselves and the recipients (p < 0.05). Conclusions: Our study shows that the donor population is in
good psychosocial healt h. It is a positive progress that spouses can be livi ng kidney donors— they seem to be t he winners.
Keywords: Living Kidney Donors; Long-Term Follow-Up; Motiv es; Sibling; Spouse; Questionnaire
1. Introduction
Kidney transplantation with an organ from a live donor is
the best treatment for the transplant recipient and living
donation is increasing in many countries [1,2]. Both short
and long term results are better. The recipients are fol-
lowed closely but the donors check-up vary. Several
studies have been published about the better life quality
among the living donors compared to background popu-
lation [3-5]. However, also better psychosocial support
has been discussed since some donors have problems
post donation [6,7].
In Sweden living kidney donors have been used for
kidney transplantation since the start in 1964. Until 31st
of December 2011, 3704 living donor kidney transplant-
tations had been performed and 9238 kidney transplanta-
tions from deceased donors. The Transplant Institute at
Sahlgrenska University Hospital in Gothenburg is the
largest of four kidney transplant centres in Sweden with
1425 (31st of December 2011) living kidney donor trans-
plantations since the start in 1965.
In Sweden, living donors are always the first choice
for patients in need of a kidney transplant. The living
donor pool has expanded from siblings and parents, to
also include spouses, friends, as well as other more dis-
tant relatives and anonymous donors. Today live donors
constitute about 45% of all kidney transplantations in
Sweden. There is no national Swedish donor registry, but
a Scandinavian register started in 2004. However, the
donors from earlier days are not included. This is a pro-
spective register and limited psychosocial issues are in-
cluded in the report.
We were interested to know more about the living do-
nors both the physical health status, and the psychosocial
well-being. Further we wanted to find out more about
their experiences of the donation process, motives for
donating, relations with the recipient after donation and
present health situation. This living donor study was ini-
tiated in 2007. The study was divided in two parts, one
medical follow-up-mainly focusing on long-term renal
function, and was published in 2011 [8]. In the second
part of this study we wanted to explore the donor’s ex-
periences of the kidney donation in different aspects in
the long term. We here present data and also pu t focus in
opyright © 2012 SciRes. OJNeph
comparing the experiences and thoughts from sibling
donors and spouse donors. Today the spouse donor is as
common as a sibling donor.
2. Subjects and Methods
The study design was cross sectional and the study was
performed between the years 2007-2009. We aimed to
approach all persons having had a donor nephrectomy
performed at Sahlgrenska University Hospital from the
start in May 1965 until the end of December in 2005, in
total 1112 donors. Of the 1112 donors 13% were de-
ceased, 6% were not possible to identify due to incom-
plete social security number and 4% were living abroad,
thus 823 persons, i.e. 77%, were available for the study.
Of the 8237/15/2012 donors, 692 participants responded
to an author constru cted questionnaire. The questionnaire
consisted of 50 questions focusing on the living donors
experiences of motives, information and health problems.
There was no standardized health form added. The ques-
tionnaires were sent to the donor by post with one re-
minder to the non-responders. There was a possibility to
reply on-line, which was used by 20% of the donors.
We used a software program for collecting the ques-
tionnaire data, the survey tool called Examinare©
(www. From this tool descriptive data
were obtained. The forms that Examinare© creates are
protected by Secure Socket Layer (SSL) and the infor-
mation between server and browser is encrypted.
The study was approved by the ethical regional board
in Gothenburg.
Statistical Methods
Normally-distributed variables were expressed as means
± SD (unless noted otherwise), and non-normally distrib-
uted variables were expressed as medians (10th and 90th
percentile). Statistical significance was set at the level of
p < 0.05. Logistic regression analyses were used to study
the relative associations of selected markers. All statisti-
cal analyses were performed using statistical software
Stata version 12.1 (Stata Corp, College station, TX, USA).
As p values are not adjusted for multiple testing, they
have to be considered as descriptive.
3. Results
3.1. Characteristics of the Donor Population
The response rate for questionnaire was 84%, 692 of the
823 available donors. Of those 65% (n = 447) were fe-
males. The median age was 61 years (range 22 - 93). The
median age at donation was 47 years (range 21 - 73). The
similar trend was found in the non-responders. The rela-
tionship to the recipients was sibling (n = 284), parent (n
= 262), spouse (n = 96), friend (n = 18), grown-up child
(n = 7) and other relation (n = 26).
3.2. Pre-Donation Statements by the Donors
The occupational situation before donation is presented
in Table 1. A high quantity of the donors 587 (84%)
were working at the time of donation, 21 were unem-
ployed, 53 retired, 13 were students and 18 were house
wives. None was disability pensioner. The initiative to
donate came from the donors themselves in the majority
of cases. Thus 474 (69%) offered to donate, the recipi-
ents physician asked in 88 (13%) cases, the recipients in
85 (12%) cases. Other family member asked in 20 (3%)
cases. The most common motives for donation was the
wish to help, worries about the recipient not receiving a
transplant and the knowledge that one could live a nor-
mal life with one kidney. Generally, the becoming do-
nors felt well informed about risks (76%), short-term
complications (69%), and long-term complications (62%).
They also felt well informed about recipient risks (73%)
and that the given kidney might stop to function or even
never function (75%). The donors felt well-informed
about the reimbursement system and sick leave regula-
tions (67%). We also asked if the information given was
too much but only 3% of the donors stated that.
Table 1. Occupational status and statements by the 692 do-
nors concerning issues before donation.
Response on pre-donation issues n %
Working 58785
Retired 53 8
Students 13 2
Unemployed 21 3
Other activities 18 3
Took the initiative to donate
Themselves 47468
The doctor of the re cipient 88 13
The recipient 85 12
Other family member 20 3
Other 28 4
Most important motives to donate
To help 51875
Worry without a transplantation 49772
Knowledge: a normal life with one kidney 24035
Felt very well-informed about the risks 52876
Short term complications 47869
Long term complications 42962
The recipients risks 50273
That the given kidney might stop functioning 51775
Too little information about risks 17 3
Felt well-informed about sick leave and reimburse-
ments 46667
Copyright © 2012 SciRes. OJNeph
The experiences following donation are presented in
Table 2. Time for recovery after donation was 1 - 2
months for 48% of the donors and 5% stated that they
had never recovered. Sick leave time was 1 - 3 weeks for
22%, 4 - 7 weeks for 37% and 8 - 12 weeks for 20%.
Longer sick leave than 12 weeks were reported by 4%.
The reimbursement system functioned completely for
325 donors (47%), partly for 124 (18%) but 98 donors
(14%) said they never received anything. However, only
7%, that is 45 donors, considered they still had financial
problems due to the donation. No one reported having
lost their work due to the donation.
Health problems related to the donatio n were stated by
12% of the donors. Experienced kidney disease was
stated in 2% and 27% had treated hypertension. Depres-
sion and diabetes were reported by a few cases, 2% for
each and persisting pain problems by 4%.
3.3. Low Pregnancy Frequency among Living
The pregnancy frequency was low, 21 donors (5% of the
female donors) had given birth after donation. Most persons
were middle-aged a t the time of donation and not in child-
bearing ages. None reported the pregnancy as a problem.
3.4. Spouses versus Siblings as Donors
The three great donor groups are siblings, parents and
spouses. From the start only siblings and parents were
accepted as live kidney donors but since 1986 spouses
were also permitted to donate.
Table 2. Statements by the 692 participants concerning post
donation health issues.
Recovery after donation n %
1 - 2 months 331 48
3 - 6 months 210 30
6 - 12 months 62 9
More than one year 58 9
Never recovered 31 5
Time for sick leave
1 - 3 weeks 154 22
4 - 7 weeks 254 37
8 - 12 weeks 140 20
Longer time 37 4
Can’t remem ber 92 13
Experienced health after the donation
Remaining health problems 79 12
Experienced kidne y disease after donatio n 11 2
Experienced kidney stones 25 4
Developed diabetes 12 2
Had hypertension tr e atment today 173 27
Had continuous nerve p ai n 28 5
Muscle weakness in abdomen 58 9
Depression 16 3
Had been pregnant after donation 21 5
A comparison of the responses from the 96 spouses
and the 284 siblings were made. In the following ques-
tions there were borderline or significant differences.
There were no significant differences between the current
age of spouses and siblings, Figure 1.
The following statements concern the motives for be-
coming a donor. The parentheses indicate the donor type
being closest to the statement.
Others wanted me to donate (sibling) (p = 0.05)
Waiting-time for a deceased kidney was too long
(spouse) (p = 0.05 )
A moral duty to donate (sibling) (p = 0.05)
My quality of life would be better (spouse) (p <
The quality of life all the family would be better
(spouse) (p < 0.00 01)
The following statements are about the information
prior to donation:
Well-informed about risks for short term complica-
tions (spo us e) (p < 0.05)
Well-informed about risks for long-term complica-
tions (spo us e) (p < 0.05)
Well-informed about complications and risks in the
recipients (spouse) (p < 0.01)
Statements and experiences after the donation:
Feeling malaise first week post donation (spouse) (p <
Better self-esteem (spouse) (p < 0.05)
Changed to more frequent contact with the recipient
(sibling) (p < 0.01)
Would consider to donate again (spouse) (p < 0.01)
Experienced pregnancy, children after the donation
(sibling) (p < 0.001)
The following statements showed no differences between
spouses and siblings regarding motives for donation: a
Figure 1. Box plot of the current age of spouses and siblings
grouped in males and females.
Copyright © 2012 SciRes. OJNeph
wish to help, religion, have a normal life with one kidney,
the donations would make me a better person, worry for
the recipient without a transplant, becoming a better per-
son and seeing no other possibility than donating. Per-
ception about getting information about the following
subjects did not differ: re-imbursement system, surgical
risks, follow-up routines, and the risk of graft failure for
the recipient.
Time for recovery and sick-leave period did not differ
between spouses and siblings. Further, there was no dif-
ference in percentage regretting the donation or having
remaining health problems. Routines for check-ups did
not differ either between the two groups.
4. Discussion
The response rate in our study was high with 82%. This
has been th e case also in earlier Swedish and Norwegian
studies on living kidney donors [9,10]. There is a recent
French study published on long-term follow-up of 310
living donors and in this study 66% responded [11]. An-
other published paper from Canada, Australia and Scot-
land, showed a response rate on 48% [12].
Voluntarism and altruism are prerequisites for living
donation. It is encouraging to find that the strongest mo-
tive for donation in our study was the wish to help
someone in need. This is also in agreement with an inter-
view study performed prior to donation [13].
To donate a kidney is a major surgical event which
means risks and a certain recovery time. Time for recov-
ery was 1 - 2 months for half of the donors and sick-leave
were 4 - 7 weeks for the majority of the donors. Thus, it is
important that the donors are offered the time needed fo r
recovery since 85% of them were working at the time of
donation in this study.
Of the responders 12% indicated that they still had
some health problem related to the donation, the largest
problem being pain which was reported by 4%. Though,
we do not know if this pa in is due to the donation proce-
dure. However, it is a common problem with chronic
pain in the general population, reported to be over 20%
in the North American population [14,15]. A recent pub-
lication by Owen et al. on pain after nephrectomy show
that 12% experienced chronic pain after donation and the
donors did not receive adequate treatment [16]. It is
noteworthy that pain after surgery is not classified as a
major complication according to the Clavien system,
where major complication includes an intervention, sur-
gical or radiological [17].
Another finding in our study was that the majority of
the donors were satisfied with the given information.
Both written and verbal information are given to the do-
nors but we think the information must be more indi-
vidualised or elaborated to reach every potential donor.
Guidelines support the n ecessity of adequate information
The most interesting part was the comparison between
sibling and spouse donors. Today a spouse donor is as
common as a sibling donor in Sweden. Who should be
preferred? Our study indicates that the spouses donate a
kidney to get a better quality of life as well as the quality
of life for the family in total. The sibling donors express
moral duty as a greater motive. In contrast to a recent
published Norwegian study we could not find that the
spouse donors had more doubts about the donation [10].
On the contrary, the spouse donors felt well-informed,
they knew the expected results, became very satisfied
and had an increased self-esteem.
Is psychosocial support necessary? We could find
some donors who reported that they did not recover, and
some with persisting economical problems. It is impor-
tant to identify these problems early. On the other hand
we do not know if it was the donation process per se or
co-existing incidents in their life or pre-donation prob-
lems that we were not aware of at the time of donation. A
thorough psychosocial investigation before donation is of
great importance.
Are check-ups necessary? There was uncertain infor-
mation about this issue. Some donors stated that they
were promised check-ups they never received. About
75% had had some check-ups, which is better than a pre-
vious study from Sweden showing that 50% were being
controlled [9]. According to our medical study on blood
pressure and kidney function made at the same time on
these donors we found that two donors had undergone
kidney transplantation and that one kidney donor was on
dialysis. We also found that two donors had chronic kid -
ney disease stage 4 and may b e starting dialysis [8]. Also,
the figure of hypertension was in agreement with our
clinical finding with 25% having treatment for hyperten-
sion. Our aim is that the donors should be offered medi-
cal check-ups on a regular basis, with a minimum of
every 5th year after the first year post d ona t ion [8].
In summary, our study shows that the donor popula-
tion is in good psychosocial health. It is a positive de-
velopment that spouses can be living donors. They seem
to be the winners.
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