Human Reproduction, Vol.31, No.3 pp. 597– 606, 2016
Advanced Access publication on January 2, 2016 doi:10.1093/humrep/dev324
ORIGINAL ARTICLE Psychology and counselling
Short- and long-term health
consequences and current satisfaction
levels for altruistic anonymous, identityrelease and known oocyte donors
Viveca Söderström-Anttila 1,*, Anneli Miettinen 2, Anna Rotkirch 2,
Sinikka Nuojua-Huttunen3, Anna-Kaisa Poranen 4, Mari Sälevaara1,
and Anne-Maria Suikkari 1
1
Väestöliitto (The Family Federation of Finland) Fertility Clinic, Olavinkatu 1 B, Helsinki, 00100 Helsinki, Finland 2Population Research Institute,
Väestöliitto, 00100 Helsinki, Finland 3Väestöliitto Fertility Clinic, Oulu, Finland 4Väestöliitto Fertility Clinic, Turku, Finland
*Correspondence address. E-mail: viveca.soderstrom-anttila@vaestoliitto.fi
Submitted on July 29, 2015; resubmitted on November 21, 2015; accepted on November 30, 2015
study question: What are the short- and long-term health consequences and current satisfaction of altruistic oocyte donors?
summary answer: Donating oocytes in the majority (.90%) of donation cycles is not associated with harmful long-term general or
reproductive health effects.
what is known already: Knowledge of long-term health effects of oocyte donation on donors is sparse and follow-up studies have
usually been carried out on commercial donors. Thus far, no major long-term harmful effects have been demonstrated. Most studies have
reported a high level of donor satisfaction, but also less favorable experiences have been published.
study design, size and duration: A retrospective cross-sectional survey of all women who had donated oocytes between 1990
and 2012 at three fertility clinics was carried out in spring 2013. A self-administered questionnaire was sent out to a total of 569 former oocyte
donors.
participants, setting, methods: In all, 428 past donors answered the questionnaire assessing donor’s demographic characteristics, short- and long-term medical and psychological experiences and satisfaction related to donations. Of the donors, 87% (371/428) were
unknown and 13% (57/428) were known to the recipient. The mean follow-up time after the donation was 11.2 years (range from 0.5 to 23
years) and the mean age of the respondents was 42 years at the time of the study. To learn whether the demographic profile of donors was affected
by the Finnish Assisted Reproduction Technology (ART) Act of 2007, we divided the 428 respondents into two groups: (i) women whose first
donation took place between 1990 and 2007 (79% of the respondents) and (ii) women whose first donation took place between 2008 and 2012
(21% of the respondents). Before 2008, donors were non-identifiable (anonymous) but after 2008 persons born as a result of gamete donation
could, from the age of 18, receive on request information identifying the donor.
main results and the role of chance: The response rate was 75% (428/569). The mean age of the donors did not differ between
the two time periods, but there was a higher proportion of donors in the youngest age group (20–24 years) and more childless donors (P , 0.05)
after 2008 than between 1990 and 2007. Immediate complications occurred in 7.2% (42/582) of the donation cycles and the most common complication was ovarian hyperstimulation syndrome (OHSS) in 5.0% (29/582) of the treatments. There were no reports of ovarian or uterine cancer
and only one case of breast cancer. After the donation, 11.5% of the donors experienced unsuccessful attempts to become pregnant. Almost all
donors (99%) were satisfied or very satisfied with their decision to donate and 95% would warmly recommend it to other women. There were
no differences between the known and unknown donors in this respect, or between the two time periods (before or after the ART Act in
2008). Four donors (1%) had regretted donation, and 7% would have wanted to have more support before and 14% after the donation.
limitations, reason for caution: Although the response rate was high, 25% of all former donors in the three participating clinics
could not be included due to lack of response. The results are based on self-reported assessment of the experiences of former donors, and it is not
possible to estimate the influence of recall bias.
& The Author 2016. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved.
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598
Söderström-Anttila et al.
wider implications of the findings: To our knowledge, this is the largest study of health consequences and satisfaction levels on
oocyte donors. Data from this study can be used to inform donor candidates about the medical aspects involved in the treatment and it provides
information on how to support these women during and after the donation.
study funding/competing interest(s): This study was supported by grants from the Medical Society Life and Health, and from
the Otto A. Malm Foundation. There are no competing interests to report.
Key words: altruistic help / complication / long-term health / oocyte donor / satisfaction
Introduction
The number of oocyte donation (OD) treatments to overcome infertility
has drastically increased since its introduction 30 years ago. Originally,
OD was developed to help women with premature ovarian insufficiency.
Nowadays, use of good-quality donor oocytes is widely used for women
beyond the age of 40 who are suffering from age-related infertility.
According to the 14th European IVF-monitoring (EIM) report, 15 825
oocyte aspirations were performed on donors in 2010, which resulted
in almost 6000 deliveries in the recipients (Kupka et al., 2014). In the
USA from 2000 to 2013, the annual number of donor oocyte cycles
increased significantly from 10 801 to 19 988 (Kawwass et al., 2013;
www.cdc.gov). In its three-decade history, OD has led to the birth of
more than 200 000 children (Woodriff et al., 2014).
As a consequence of the increasing popularity of OD, there has been a
growing demand for oocytes all over the world. The practice of OD and
the type of donor used differs between countries depending on regulations and legislation. The identity of donors can be either anonymous
(not disclosed) or openly disclosed to the child at a specified age by legislation. Within this regulatory framework, non-patient donors include
volunteer, altruistic donors (donation without financial reward),
known donors (donation to a known recipient) and commercial
donors (donation with monetary compensation) (Purewal and van den
Akker, 2009). Patient donors are women undergoing in vitro fertilization
(IVF) who use some of the oocytes themselves and give some away, often
in order to receive subsidized infertility treatment (Purewal and van den
Akker, 2009). Commercial donors are common in the USA, while monetary remuneration of donors is prohibited in many European countries.
There are intrinsic differences between the donor groups on demographic characteristics and motivation for donation. Altruistic donors,
either unknown or known to the recipient, are usually parous and cohabiting or married, whereas he majority of commercial donors are nulliparous and single (Purewal and van den Akker, 2009). Within
Europe, the sociodemographic characteristics of donors vary between
different countries, but the mean age of the donors has been reported
to be 27.4 years, 61% are living in couples, 69% are employed, 15% students and 52% have at least one child (Pennings et al., 2014). In a national
study of Swedish identity-release donors the mean age of the donors was
30 years, 65% were cohabiting or married and only one-third had biological children of their own (Skog Svanberg et al., 2012, 2013).
Volunteer oocyte donors are basically driven by an altruistic wish to
help infertile couples (Söderström-Anttila, 1995; Fielding et al., 1998;
Purewal and van den Akker, 2009; Skog Svanberg et al., 2012). These
donors have often experienced infertility problems among near relatives
and friends or in connection to their daily work (Söderström-Anttila,
1995; Fielding et al., 1998). The motivation of commercial donors
appears to be a mixture of altruistic purposes and financial gain
(Purewal and van den Akker, 2009). Other reasons for donating
oocytes among commercial donors are confirmation of their own fertility
(Jordan et al., 2004) and a wish to pass on their own genes (Kalfoglou and
Gittelsohn, 2000). Highest levels of altruism among European oocyte
donors have been found in France (100%), Finland (89%) and Belgium
(86%) (Pennings et al., 2014).
Non-patient oocyte donors are exposed to ovarian stimulation and
vaginal retrieval of oocytes for the benefit of another, often unknown,
person. Concern has been raised regarding the potential long-term
medical risks of stimulatory drugs and repeated oocyte aspirations,
and possible psychological harm to the donors afterwards (Ahuja and
Simons, 1998; Pearson, 2006; Woodriff et al., 2014). A number of
studies have investigated immediate medical risks related to OD. A
retrospective study of immediate complications after 4052 donor egg
retrievals from Spain showed moderate or severe ovarian hyperstimulation syndrome (OHSS) in 0.5% and severe complications related to egg
retrieval in 0.4% (Bodri et al., 2008). In a paper of Maxwell et al., 2008,
serious complications (OHSS, infection requiring intravenous antibiotics,
bleeding) occurred in 0.7% of oocyte retrievals in 973 cycles reviewed.
Most research into the experiences of oocyte donors has been carried
out shortly after, or within a few years of the donation. In these studies,
despite of the discomfort related to the procedure, the majority of the
oocyte donors (60 –91%) have reported a high level of satisfaction
with their experience (Schover et al., 1991; Rosenberg and Epstein,
1995; Fielding et al., 1998; Söderström-Anttila, 1995; Jordan et al.,
2004; Zweifel et al., 2006; Purewal and van den Akker, 2009; Skog Svanberg et al., 2012). However, less positive donor experiences have also
been reported. In a qualitative follow-up study on 33 commercial
donors from the USA, none of the participants regretted the donation,
but there were a number of areas that affected donors’ overall satisfaction with the donation experience, including the physical process and
side-effects of ovarian stimulation and oocyte retrieval, compensation
and quality of medical care (Kalfoglou and Gittelsohn, 2000). Rejection
of oocyte donor candidates has also been described as disappointing
and upsetting for some women (Zweifel et al., 2009).
Thus far, only a few studies have looked into the long-term consequences of being an oocyte donor. In a study by Kramer et al. (2009),
155 former USA commercial donors completed a survey an average of
9 years after their first donation. The response rate was 49%, one-third
of the donors had experienced OHSS, and 34% reported medical
changes of potential interest to oocyte recipients and offspring (Kramer
et al., 2009). In another survey-based retrospective study with a follow-up
of 2–15 years, 16.3% of commercial oocyte donors experienced physical
symptoms afterwards (e.g. infertility, cysts, fibroids and weight gain) and
20% reported long-term psychological consequences related to donation
(Kenney and McGowan, 2010). Only a few studies have addressed postdonation reproductive success among donors. Of past donors, 5–10%
had experienced problems to become pregnant after the donation
(Kramer et al., 2009; Stoop et al., 2012).
599
Health consequences of oocyte donors
Since 1991, OD treatments have been performed at the fertility clinics
of Väestöliitto (The Family Federation of Finland) (Söderström-Anttila
and Hovatta, 1995). Most donors have been anonymous to the recipient
couple, but donation to a known recipient, a sister or a friend, has also
been possible. Women donating to an unknown person have to be
,36 years old and women donating to a known recipient have to be
,41 years old. Some donors take part in the OD program as crossdonors, because they want to help an infertile relative or friend to get
treatment without too long waiting time. This cross-donation or personalized anonymity system means that the recipient receives oocytes from
someone else in exchange for the oocytes donated by the donor she
brought with her (Pennings et al., 2014). Oocyte donors at the Väestöliitto Clinics get general information about indications for OD treatment
in recipients, and afterwards they have the possibility to get to know if the
recipient got pregnant or not.
Until September 2007, there was no legislation regulating fertility
treatments in Finland. On 1 September, the Finnish Act on Assisted Fertility treatments (Assisted Reproduction Technology (ART) Act, 1237/
2006) was enacted, stating that gamete donors have to agree to their
identities being registered in a national donor register kept by the National Authority for Medico-legal Affairs in Finland. Thus, from the age of 18,
persons born after treatment with donated gametes can receive information identifying the donor on request. According to the Finnish ART Act,
gametes from one donor can be used for producing children in up to five
families. During the years that treatments have been carried out oocyte
donors have been reimbursed for their expenses, such as traveling costs
and medication. Since September 2007 the oocyte donors may, in addition, be given an extra sum of E250 for the inconvenience related to the
donation process.
We undertook a retrospective study of all oocyte donors who had
donated oocytes at Väestöliitto Clinics between 1990 and 2012. The
primary purpose of the study was to obtain data on donor profile and
motivation, concerns related to the donation, short- and long-term
medical and reproductive health, as well as post-donation feelings and
satisfaction. The secondary aim was to examine whether there were differences in the demographic profiles of donors before and after the ART
Act in Finland in 2007.
Materials and Methods
A self-administered questionnaire was sent to women who had donated
oocytes at three Väestöliitto clinics in Finland (Helsinki, Oulu and Turku),
between 1990 and 2012. Survey questions were designed in cooperation
with reproductive endocrinologists at Väestöliitto Fertility Clinics and family
sociologists at the Population Research Institute, Väestöliitto, on the basis of
earlier research. Before sending out the letters, addresses of the donors
were checked through the Finnish Population Register Center. Two donors
had died. After excluding donors who had prohibited the disclosure of their
contact information, or whose addresses could not be confirmed (altogether
83 women), a total of 569 questionnaires were sent out in spring 2013. A reminder letter was sent out if no answer was received within 1 month.
Survey questions
Previous literature on donor attitudes, experiences and motivations
(Söderström-Anttila, 1995; Klock et al., 2003; Jordan et al., 2004; Kramer
et al., 2009; Kenney and McGowan, 2010; Skog Svanberg et al., 2012) was
used as a model in designing the questions. Survey items were repeatedly
discussed and their reliability assessed by fertility endocrinologists at
Väestöliitto Fertility Clinic and family sociologists at the Population Research
Institute, Väestöliitto. The questionnaire is provided in the Supplementary
Information.
The first part of the questionnaire assessed demographic information such
as age, education, the number of the donor’s own children at the first OD and
the total number of donations. Another set of questions were on motivations
and other factors finally contributing to the decision to become a donor. Most
questions were directed with open-ended sections for further comments.
We asked if the donor had any concern related to the donation and if ‘Yes’,
what concern? Other questions enquired about general experiences related
to hormone stimulation, oocyte retrieval, provision of information, as well as
psychological support.
Occurrence of complications and other physical and psychological harms
were asked with multiple questions:
‘Did you encounter any medical complications related to ovarian stimulation and oocyte retrieval? (No/Yes)’. If Yes, the respondents were then
asked if the complication(s) had been OHSS, bleeding or infection, or the respondent could answer to an open-end option (‘other complication, please
specify’). In addition, open-end questions were asked if ovarian stimulation
and oocyte retrieval had been associated with any other negative physical
and psychological consequences.
If the respondent’s answer was unclear, for example, about the nature of
complication, or whether there had been one or several complications
(OHSS, cysts, bleeding) this information was gathered from the patient
medical records. Furthermore, there were questions about long-term gynecological health problems, gynecological surgical procedures and fertility
problems after donation:
Have you been diagnosed with any serious gynecological disease after the
donation? If yes, what disease?
Have you gone through surgical procedures after the donation? If yes, which
procedure?
Have you had unsuccessful attempts to become pregnant for more than 12
months after the last donation? Yes or no?
Furthermore, there were questions about general satisfaction, if they would
donate again, and if they would recommend donating oocytes to other women.
In the questionnaire, there were also questions about disclosure of the
donation to other people, about how much they knew about the children
who were born, and their attitudes to and relationship with, the offspring
born after donation. These results will be reported elsewhere.
Statistics
To learn whether the demographic profile of donors was affected by the ART
Act in 2007, we divided the 428 respondents into two groups: (i) women
whose first donation took place between 1990 and 2007 and (ii) women
whose first donation took place between 2008 and 2012. The data were analyzed using x 2 tests and F-tests for age, parity and employment status at the
time of first donation. A level of P , 0.05 was used to indicate statistically significant differences between groups. Analyses were performed with STATA
13.0 software (Metrika Consulting, Sweden).
Ethical approval
The study was approved by the ethics committee of Gynecology and Obstetrics, Pediatrics and Psychiatry, Hospital district of Helsinki and Uusimaa.
Results
The response rate among the oocyte donors was 75.2% (428/569). The
mean follow-up time was 11.2 years (ranging from 0.5 to 23 years) and
600
Söderström-Anttila et al.
the mean age of the respondents was 42 years at the time of the study.
The number of responding donors during different time periods is
shown in Table I. The majority of the respondents (371/428; 86.7%)
had donated oocytes to an unknown recipient, 34 (7.9%) had donated
to a sister and 23 (5.3%) had donated to another relative or a friend.
Between 1990 and 2007, 10.9% of the responding donors were
known to the recipient. After the ART Act in 2007, 23% of the respondents donated to a known person, either a sister or a friend (P ¼ 0.004).
The year of the first donation was not reported in 21 cases.
Donor profile
The demographics of the donors are shown in Table II. The mean age of
former donors was 30.3 years at the time of the first donation. The mean
age of donors with an unknown recipient was 29.9 years and that of
women donating to known recipients was 32.8 years (P , 0.001). The
majority of women donated only once or twice (93.0%). Those who
donated three or more times were younger at the time of the first treatment than those who donated only once or twice (28.2 versus 30.1 years;
P , 0.05) and had fewer children than the others (1.2 versus 1.5; ns)
(data not shown). At the time of the first donation, 27% (115/428)
had no children themselves; the proportions of unknown (anonymous
and identity-release) and known donors who were childless was similar.
The demographic characteristics of the donors were compared
before and after the ART Act in 2007 (Table II). The mean age of the
donors did not differ, but there was a higher proportion of donors in
the youngest age group (20–24 years) and in the oldest age group
(35 –40 years) after 2008 (18.4 and 26.4%), compared with figures
between 1990 and 2007 (11.4; 16.6%), respectively (P ¼ 0.011).
There were also more childless donors after 2007 (37.5%) compared
with before 2008 (23.9%) (P ¼ 0.015). The number of students was
higher among donors after 2007 (25.0%) compared with the previous
time period (15.7%). The difference was statistically significant among
those who donated to an unknown recipient (P ¼ 0.038). One-third
of donors had a university education in 2008–2012, a slightly higher
proportion than in 1990–2007 but the difference was not statistically
significant.
A clear majority of donors were motivated by an altruistic wish to help
infertile women and couples (Table III). In all, 79% (84% among those
who donated to an unknown recipient) maintained that ‘a general wish
to help’ strongly influenced their decision to donate and 69% considered
that difficulties related to donation were small compared with the fact
that infertile couples received help (Table III). Only 2% of the respondents said that the financial compensation paid for the donation had a
strong influence, and 14% said that it had some influence on their decision
to donate oocytes. The importance of financial compensation (in addition to traveling and medication costs) increased slightly over the
years, so that 5% of respondents who had donated between 2008 and
2012 claimed that the compensation had a strong influence on their
decision. Still, a wish to help remained the most important motivational
factor also after 2007 as 74% (87% of those who donated to an unknown
recipient) said that a general wish to help strongly influenced their
decision.
The larger share of donations to a known recipient in 2008–2012
when compared with 1990–2007 (see also Table I) was reflected in
that 24% of donors in 2008– 2012 said that a wish to donate to a
certain friend or relative strongly influenced their decision to donate
(compared with 13% in 1990–2007) (Table III). Of the respondents,
19 donors (4%) mentioned in an open-end question about their own difficulties in becoming pregnant and the use of donated sperm to help them
have a baby as a motivating factor for the donation.
Concerns and experience regarding medical
treatment
The oocyte donors were asked if they had any concerns before donation,
and, in an open-ended question, what they had been anxious about. The
majority of the donors (79%) had no concerns related to the treatment
while 21% were worried or felt uncertain about issues such as possible
side-effects of hormone stimulation, pain related to medication and
oocyte retrieval, ability to take hormone injections as well as long-term
negative implications for their general health or fertility.
The perceived experiences related to the medical procedure associated with donation are shown in Table IV. Only 2.3% had found
hormone injections painful. Half of the donors had not experienced
any pain related to oocyte pick-up (OPU), while 13.6% thought it was
painful. Of all donors, 9.6% had experienced more physical side-effects
than they had expected. The majority of donors (87.4%) thought they
Table I Respondents according to the time of first donation (n 5 428; 371/57).
Mean follow-up
time
All, n
%
Unknown to the
recipient, n
%
Known to the
recipient, n
%
The proportion of known
donors of all donors (%)
.............................................................................................................................................................................................
1990– 1995
19.6
72
65
18.5
7
12.7
9.7
1996– 2001
14.3
130
31.9 114
32.4
16
29.1
12.3
2002– 2007
8.6
118
29.0 106
30.1
12
21.8
10.2
19.0
20
2008– 2012
3.0
87
1990– 2012
11.2
407
17.7
21.4
100
67
352
x2a
No information on exact
donation yearb
All donors
a 2
100
55
8.58 P-value
21
19
2
428
371
57
x -test is used to detect if there is a statistically significant difference in the proportion of known donors between the time periods.
Six past donors wrote that the first donation was in the 1990s but they could not remember the exact year (see also Table II).
b
36.4
100
23.0
13.5
0.035
13.3
601
Health consequences of oocyte donors
Table II Demographics of the donors.
All
(n 5 428)
%
First donation in
1990–2007
(n 5 326)
%
First donation in
2008– 2012
(n 5 88)
%
P-valuea
.............................................................................................................................................................................................
Donation to unknown/known recipient
Unknown
86.7
89.0
77.3
0.004
Known
13.3
11.0
22.7
20–24
12.9
11.4
18.4
25–34
68.4
72.1
55.2
35–40
18.7
16.6
26.4
Age at the first donation
Mean (SD)
30.3 (4.3)
30.2 (4.1)
30.8 (5.0)
Age at the first donation, anonymous recipient
Mean (SD)
29.9 (4.1)
29.9 (3.9)
30.0 (4.9)
0.861
Age at the first donation, known recipient
Mean (SD)
32.8 (4.8)
32.4 (4.9)
33.5 (4.6)
0.459
Age at the time of the survey
Mean (SD)
41.5 (7.1)
43.7 (6.0)
33.8 (5.1)
Age at the first donation
Number of years since first donation
Mean (SD)
11.2 (5.9)
13.4 (4.5)
3.0 (1.5)
Number of donations
1
74.8
75.8
71.6
2
18.2
17.5
21.6
3
4.4
4.0
6.8
4
1.4
1.8
0
5
1.2
0.9
0
Employed
59.3
59.1
58.0
Unemployed
5.4
5.9
2.3
Student
17.6
15.7
25.0
Housewife
17.8
19.4
14.8
Secondary level
education or less
22.6
21.3
25.0
Tertiary level, vocational
48.7
51.5
42.0
Tertiary level, academic
28.7
27.2
33.0
0 children
26.9
23.9
37.5
1 –2 children
55.4
58.3
42.1
3 –5 children
17.8
17.8
20.5
Mean (SD)
2.0 (0.9)
2.0 (0.9)
2.2 (1.0)
Occupation at the time of the first donation
Educational background
Number of children at the first donation
Number of children at the first donation, only
women with children
0.011
0.244
0.350
0.114
0.285
0.015
0.123
a
P-value denotes the significance level of x2-test, testing the difference between two time periods.
had received enough information about the medical process and 54.9%
thought that the practical arrangements were very easy. There were no
significant differences regarding the experiences of the medical procedures between the donors before and after 2008 (data not shown)
except for the fact that the donors before 2008 found the practical
arrangements more often easy than donors in the later time period
(P ¼ 0.003). After 2008, especially employed donors and donors with
children of their own more often found it troublesome combining the
donation process and daily responsibilities, such as work and taking
care of their family.
Generally, there was a high level of satisfaction with the amount of
support offered during the process. Overall, 91% considered the
support given before and after the process sufficient.
(42/582) of all donations (Table V). In addition, 15.9% (68/428) of
donors reported various physical symptoms and 3.3% (14/428) psychological symptoms related to the treatment (Table V). Eleven of the
donors had needed hospitalization for between 1 and 7 days (2.6%/
donor; 1.9%/donation) and another 12 donors had visited the hospital
for a medical check-up after the oocyte collection. OHSS was the
most frequently reported immediate medical complication, occurring
in 5.0% of all donations (29/582) (Table V) and it occurred more often
in nulliparae women than in donors with previous children (P ¼ 0.044)
(data not shown). The incidence of complications was similar during
different time periods. However, women donating after 2007 reported
physical symptoms more often (32.2%) than women donating before
2008 (12.2%) (P , 0.001).
Short-term complications
Long-term medical health
Immediate medical complications related to ovarian stimulation
and oocyte retrieval (OHSS; bleeding, infection) occurred in 7.2%
The donors were asked whether they had experienced any serious gynecological disorders after the donation. Twenty-one of the former donors
602
Söderström-Anttila et al.
(4.9%; 21/427) had been diagnosed with gynecological conditions
including endometriosis (n ¼ 6), cervical cell atypia or dysplasia
(n ¼ 5), endometrial hyperplasia or polyps (n ¼ 4), uterine fibroids
(n ¼ 3), occult ovarian insufficiency (n ¼ 2) and breast cancer (n ¼ 1).
The woman with breast cancer was born in 1967, had donated once in
2003 and had three children of her own. The breast cancer was diagnosed in 2004. In addition, one woman born in 1966 (donation in
1995) wrote that she had retired because of cancer, but she did not
give details. Thrombophilia had been identified in one donor, who
herself had experienced several miscarriages.
Table III Donors’ motives and incentives for donation.
All
%
1990–2007
%
2008–2012
%
Gynecological surgery had been carried out in 77 women (18.1%)
(Table VI) and most procedures (69) had been performed on women donating before 2008. The most common surgical operation was sterilization (23 donors) and hysterectomy (11 donors). There were no surgical
procedures performed because of gynecological cancer.
One-third of the former donors (33.9%) had become pregnant and
given birth after the donation. Unsuccessful attempts to become pregnant (more than 12 months) were experienced by 11.5% (48 women)
and 4.9% (21 women) had registered for fertility treatment. Donors
with no previous deliveries had experienced difficulties in becoming
pregnant more often than donors who already had children of their
own (P ¼ 0.004, data not shown). There were no statistically significant
difference between donors who had donated two or more times and
donors who had donated only once in the prevalence of post-donation
infertility.
P-value
........................................................................................
A general wish to help
Strong influence
79.1
80.6
73.9
Some influence
17.9
16.3
23.9
No influence
2.7
2.8
2.3
Cannot say
0.3
0.3
0
0.400
Difficulties related to donation are minor compared with the help I can offer
to infertile couples
Strong influence
68.9
68.8
69.3
Some influence
23.2
23.3
22.7
No influence
6.4
6.6
5.7
Cannot say
1.5
1.3
2.3
0.902
Financial compensation paid for OD
Strong influence
1.8
1.0
4.6
Some influence
14.3
12.4
20.7
No influence
81.3
84.2
71.3
2.6
2.4
3.5
Cannot say
0.019
I wanted to donate oocytes to a certain friend or relative
Fully agree
Agree somewhat
Disagree
Cannot say
15.8
13.2
24.4
5.4
4.5
8.1
78.1
81.3
67.4
0.8
1.0
0
0.024
Current satisfaction and feelings about
donation
Almost all donors (98.6%) were satisfied or very satisfied with their decision to donate and 94.9% would warmly recommend it to other
women. There were no differences between the known and unknown
donors in this respect, or between women who had donated in
1990–2007 and women whose first donation took place after 2007.
Four donors (1%) had regretted donation, 1.4% had experienced feelings
of loss and 4.9% had experienced feelings of mental confusion afterwards. Three of those women who regretted donation had donated
to an unknown recipient, one to a known recipient. The reasons for
regretting were related to difficulties to become pregnant themselves,
unsuccessful treatment in the recipient and disappointment because
of divorce of the recipient couple soon after the child was born.
None of them reported any complications or severe long-term health
consequences.
In the open-ended questions 49 donors (11.4%) had suggestions on
improving the donation process and these were related mainly to two
issues. Both unknown and known donors wished they had received
more detailed information about physical and psychological discomfort,
OHSS and pain related to ovarian stimulation and OPU. Furthermore,
among the unknown donors there was a strong wish for the opportunity
to talk to someone from the medical team after the oocyte collection to
Table IV Donors’ experiences of the donation process (n 5 428).
I fully agree
%
I agree to some extent
%
I do not agree at all
%
I cannot say
%
.............................................................................................................................................................................................
I did not experience any harmful side-effects
39.0
45.1
15.5
0.5
The physical side-effects were greater than expected
9.6
23.4
64.6
2.3
The psychological side-effects were greater than expected
3.5
12.2
83.1
1.2
The hormone injections were painful
2.3
22.7
74.5
0.5
The oocyte collection procedure was painful
13.6
37.2
48.6
0.7
The practical arrangements were easy
54.9
42.7
2.1
0.2
I got enough information during the whole donation process
87.4
11.5
0.7
0.5
I would have wanted to have more support before the treatment
1.2
6.1
90.6
2.1
I would have wanted to have more support after the treatment
2.6
11.1
84.2
2.1
603
Health consequences of oocyte donors
Table V Immediate complications and physical and
psychological side effects.
No. of
donors
Percentage
of donors (%)
(n 5 428)
Percentage of
donations (%)
(n 5 582)
........................................................................................
Complications
42
9.9
29
6.9
5.0
Intra-abdominal
bleeding
6
1.4
1.0
Infection
3
0.7
0.5
Allergic reaction
2
0.5
0.3
Damage to the
urine bladder
1
0.2
0.2
1
0.2
0.2
OHSS
Ovarian cyst
a
Physical side effects
7.2
68
15.9
11.7
Pain
24
5.6
4.1
Bloating
21
4.9
3.6
8
1.9
1.4
Menstrual changes
and increased
menstrual pain
Nausea
5
1.2
0.9
Other physical
symptoms
21
4.9
3.6
Psychological side
effectsa
14
3.3
2.4
Mood changes/
irritability
8
1.9
1.4
Sadness/
depression
3
0.7
0.5
Other psychological
side effects
3
0.7
0.5
a
Several side-effects possible per donor.
get information about the quality of their oocytes. The donors also
expressed a wish to know of the outcome of the recipient’s treatment,
including whether a child had been born and, if so, the gender of the child.
Of all donors, 74.7% would donate again, 17.8% would consider donation again, if age and health would allow, and 7.5% were not willing to
donate again.
Discussion
To our knowledge, this is the largest retrospective study of short- and
long-term health of altruistic non-patient oocyte donors, made up of
428 women donating over a 23 year time period. The response rate of
75% was higher than in earlier reports and the study included both anonymous, identity-release and known donors. Immediate complications
occurred in 7.2% of the donation cycles including OHSS in 5.0% of the
cases. Regarding long-term health of oocyte donors, it was reassuring
to find that there were no reports of gynecologic cancer and only one
report of breast cancer. Almost all donors (99%) were satisfied with
the experience and only four donors regretted the donation.
In the last decade in Finland, the annual number of embryo transfers
using donor oocytes has been 700 –800, except for a small decline in
treatments in 2007 when the ART Act came into force (National Institute
for Health and Welfare, Finland, 2015). The Finnish oocyte donor profile
has been defined as a highly educated woman who donates to an
unknown recipient for purely altruistic reasons (Pennings et al., 2014).
This could be confirmed by this study. The donor mean age of 30
years was somewhat higher than the average age of oocyte donors
(27 years) reported within Europe, and the proportion of donors with
children of themselves (73%) was also higher than the average in
Europe (Pennings et al., 2014). In studies of identity-release donors in
Sweden the mean age of the donors has also been 30 years, but only
one-third have children of their own (Skog Svanberg et al., 2012,
2013). In this study, the characteristics of donors, such as the mean
age at first donation, their education and the mean number of donors’
own children, before and after the ART Act were very similar. However,
there was a tendency toward certain demographic differences among the
donors between the two time periods. There were more donors in the
youngest age group (20– 24 years), more childless donors and more students and fewer employed women and house-wives donating after 2007
than there were before legislation was enacted. One explanation could
be that the recruitment of gamete donors has shifted from printed
media to the internet and might therefore have reached young women
more effectively than before. The full extent to which the Finnish ART
Act and mandatory registration of identifiable personal information influenced the donor profile cannot be established from this study, and needs
to be confirmed.
The reason for participating in the OD program was almost exclusively
altruistic, with a strong wish to be able to help couples suffering from infertility. Interestingly, over the last 5 years (2008– 2012), a growing
number of donors mentioned a wish to help a certain friend or relative
as a motive for donation. One reason for this might be the long waiting
time for treatment. If the recipients recruit a donor themselves, either
as a known or unknown ‘cross-donor’, treatment can be carried out
without any waiting time. We also noted a slightly greater emphasis on
monetary compensation as a motivating factor over the last years,
from 1% in 1990–2007 to 5% after 2007. The small extra payment of
E250 to compensate for inconvenience, which was sanctioned by the
ART Act, may be of importance for some donors. However, the proportion of donors who regarded financial compensation as important
remained small compared with the average situation within Europe,
where 11% report pure financial and 34% altruism and financial as
motives for donation (Pennings et al., 2014).
It was reassuring to find that only a minority of the past donors had
experienced pain in connection to drug administration and OPU. The
practical arrangements were also regarded as easy, although more
often among those who donated before the ART act. After 2008, less
satisfaction with the practical arrangements was reported especially by
employed donors and donors with children. The explanation for this
could be that troubles in combining the donation process with daily
responsibilities such as work and taking care of the family were still
remembered.
In this study, the incidence of immediate medical complications after
ovarian stimulation and OPU was 7.2% of all procedures (OHSS 5.0%)
and 2.6% of donors needed hospitalization. This is a significantly lower
complication rate than reported by Kramer et al. (2009). They reported
some degree of OHSS in 30% of their 155 donors and 12% had been hospitalized and/or undergone paracentesis (Kramer et al., 2009). On the
other hand, in two other large studies the immediate complication rate
604
Söderström-Anttila et al.
Table VI Gynecological disorders and surgery after the donation process.
All
% (n)
Donation to an unknown recipient
% (n)
Donation to a known recipient
% (n)
.............................................................................................................................................................................................
Gynecological disorders No
Gynecological surgery
Type of surgerya
95.1 (406) 94.9 (351)
96.5 (55)
Yes
4.9 (21)
5.1 (19)
3.5 (2)
Total % (n)
100 (427)
100 (370)
100 (57)
No
81.9 (349) 81.3 (300)
86.0 (49)
Yes
18.1 (77)
18.7 (69)
14.0 (8)
n
100 (426)
100 (369)
100 (57)
Sterilization
23
21
Hysterectomy
11
10
1
Cesarean section
9
7
2
Laparoscopy
6
6
0
Enucleation of myoma
4
4
0
Endometriosis operation
3
3
0
Oophorectomia/resection of one ovary
3
2
1
Conisation/loop
4
4
0
Removal of polyps
6
6
0
Endometrial ablation
2
2
0
Removal of cyst
2
2
0
14
12
2
Other small procedures
2
a
Note that several gynecological surgeries possible per donor.
has been ,1% (Bodri et al., 2008; Maxwell et al., 2008). In the study by
Bodri et al. (2008), all OHSS cases had been triggered by the use of
human chorionic gonadotrophin and half of the women needed hospitalization. Severe complications related to egg retrieval, such as intra-abdominal bleeding, severe pain and ovarian torsion, occurred in only 0.4% (Bodri
et al., 2008). At our Väestöliitto Clinics, over the previous 3 years (2012–
2014) ovarian stimulation of donors has been performed using a milder
stimulation protocol than 20 years ago. Nowadays, we mostly use an antagonist protocol aiming at no more than 8–12 oocytes. We also use
gonadotrophin-releasing hormone agonist as a trigger, if there is a risk of
OHSS. In this study, women who had not delivered a child had significantly
higher levels of OHSS than donors with children. We do not have all the
data necessary to explain this finding, but there was no clear connection
to donor age (data not shown). Ovarian response may be difficult to
predict and our results indicate that nulliparae women should be stimulated with extra caution.
In addition to those symptoms classified as complications, 16% of the
donors in this study experienced various physical side-effects, such as
abdominal bloating, pain and nausea. The frequency of these symptoms
was lower among donors before 2008 compared with those donating
later, which probably means that many less significant side-effects are
forgotten over time.
In the questionnaire, the donors were asked about serious gynecological disorders during the years after donation. Only a small proportion
(5%) reported gynecological disorders and most of these could not be
regarded as serious, for example, fibroids, mild hyperplasia and mild
atypia in a pap smear. There were six cases of endometriosis (1.4%)
which is also lower than the generally estimated prevalence of 10%
(Kvaskoff et al., 2015). Gynecological operations were performed in
18% of the donors, but almost half of these surgical procedures were
related to child birth or sterilization.
Regarding long-term malignancy risk in oocyte donors, only a few case
reports on breast and colon cancer have been published (Ahuja and
Simons, 1998; Schneider, 2008). According to Kramer et al. (2009),
one woman with a strong family history of breast cancer was diagnosed
with breast cancer at the age of 41, 12 years after her first donation.
Another woman was diagnosed with melanoma at 35 years of age
(Kramer et al., 2009). Recent systematic reviews and meta-analysis of
available studies have pointed to an overall lack of association between
controlled ovarian stimulation for IVF and the risk of breast cancer
(Sergentanis et al., 2014; Gennari et al., 2015). Results from these
studies looking at a possible link between fertility drugs and ovarian
cancer have been controversial, but most studies have shown no evidence of an increased risk of invasive cancer in subfertile women compared with untreated subfertile women, or with a control group of
women of a similar age (Rizzuto et al., 2013, Diergarde and Kurta,
2014). Reassuringly, in this study there was no report on any ovarian,
tubal or endometrial cancer. There was only one case of breast cancer
diagnosed one year after the donation, in a woman who had made one
donation. As breast cancer was not specifically asked in the questionnaire, we cannot exclude possible under-reporting here.
The respondents of this survey were all healthy volunteers and 73%
had children of their own at the time of first donation and 34% had
given birth afterwards. Of those who wanted to become pregnant
after donation, 11.5% had not succeeded in their attempts during a
time period of at least 1 year. Unfortunately, we did not specifically ask
about the time of the pregnancy attempt in relation to the last donation.
On the basis of this study, it is not possible to determine whether later
605
Health consequences of oocyte donors
infertility was related to the donation process or to other factors, such as
aging of the donors or male fertility problems. At least, donors reported
no medical disorders such as tubal occlusion which could possibly be
related to the donation. To date, there are only a few previous studies
reporting on infertility problems among former oocyte donors. In a
large long-term USA follow-up study, 10% of 155 former donors experienced fertility problems subsequent to the donation (Kramer et al.,
2009). In a Belgian study, 60 past donors were contacted by phone,
16% of the respondents reported changes in the menstrual pattern,
but 95% had not had any problems becoming pregnant following their
donations (Stoop et al., 2012). Risk of infertility problems after
donating oocytes seems to be low, but further follow-up studies will
be needed in this area.
Almost all donors (99%) were satisfied or extremely satisfied with the
donation process. This is in line with earlier studies showing a satisfaction
rate of between 61 and 91% (Schover et al., 1991; Söderström-Anttila,
1998; Jordan et al, 2004; Kenney and McGowan, 2010; Skog Svanberg
et al., 2012). In general, altruistic donors have been somewhat more
likely to report long-term positive attitudes toward having donated
than their counterparts for whom financial compensation was significant
in their decisions to donate (Kenney and McGowan, 2010). The high satisfaction rate found in this study suggests that the majority of donors were
well-prepared and highly motivated. Although most donors were satisfied with the medical care and support offered to them, some (9%)
emphasized that it would have been very desirable to have had more
detailed information about physical discomfort and inconvenience
related to the treatment. These donors had been unprepared for the
physical side-effects during and after the cycle. Furthermore, the unknown
donors (anonymous and identity-release) emphasized the value of psychosocial support and discussions after the donation procedure. They wanted
more feedback on the quality of their oocytes and knowledge of the
outcome of the recipient’s treatment.
The data are retrospective and are based on self-reported attitudes,
motives, experiences and health consequences of women participating
in an OD process in 1990–2012. The results are based on self-reported
assessment of the experiences of former donors, and it is not possible to
estimate the influence of recall bias. Since we did not specifically ask for
certain serious diseases, we cannot exclude the possibility of underreporting of, for example, breast cancer. It is however, very unlikely
that the responder should not have mentioned such a disease, as examinations of the breasts is part of a routine gynecologic examination in
Finland. In addition, as there was no information about the timing of
the infertility, it is not possible to determine the relationship between donation and post-donation infertility.
The time of the first donation was divided into two time periods, from
1990 to 2007 and from 2008 to 2012, for specific analysis. It should be
noted that some donors in 2007 might have donated after the ART
Act came into force in September of that year, because the months donations were made were not documented in the study.
Although the response rate was high, one quarter of all former donors
could not be reached or declined to participate. However, it can be
assumed that women who had experienced complications and various
side-effects would be more eager to participate in the study. Therefore,
it is possible to speculate that the absolute frequency of complications
may not be higher than that reported.
We conclude that donating oocytes does not seem to have harmful
long-term medical or reproductive health effects. Immediate complications
occurred in 7.2% of the donation cycles and the most common complication was OHSS in 5.0% of the treatments. There were no reports of any
ovarian or uterine cancer and only one case of breast cancer. The
donors’ suggestions on improving the donation process were related
to two issues. First, they emphasized the importance of receiving detailed
information about possible physical side-effects before the treatment.
Second, the donors expressed a strong wish for a discussion with a professional from the medical team after the donation to get information
about the quality of their oocytes and of the outcome of the recipient’s
treatment. To further improve donor satisfaction in our donation
program, it will be important to focus on these two points mentioned
above. Overall, the donors were happy with their decision to donate,
even 20 years after they had done so.
Supplementary data
Supplementary data are available at http://humrep.oxfordjournals.org/.
Acknowledgements
The authors wish to thank Gwyneth Olofsson for correction of the
English language.
Authors’ roles
V.S.-A. and A.-M.S. were involved in the overall study conception and
design, data collection and preparation of the manuscript. A.M. performed the statistical analysis and preparation of the manuscript.
S.N.-H., A.-K.P. and M.S. were involved in data collection and A.R.
was involved in the overall study design. All authors revised the article
critically and approved the final version.
Funding
This study was supported by grants from the Medical Society ‘Life and
Health’ and from the Otto A. Malm Foundation.
Conflict of interest
None declared.
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