Received: 30 May 2018 | Revised: 18 July 2018 | Accepted: 22 July 2018

DOI: 10.1111/ajt.15039

PERSONAL VIEWPOINT

Preoperative psychological evaluation of uterus transplant

recipients, partners, and living donors: Suggested framework

Stina Järvholm1 | Ann Marie Warren2 | Maria Jalmbrant3,4 | Niclas Kvarnström5 |

Giuliano Testa6 | Liza Johannesson1,6

1
Department of Obstetrics and
Gynecology, Sahlgrenska University Uterus transplant has become a real option for women with uterine‐factor infertility
Hospital, Sahlgrenska Academy, Institute of to become pregnant and give birth. The screening before uterus transplant consists of
Clinical Sciences, Gothenburg, Sweden
2
a multidisciplinary evaluation and includes the potential recipient, living donor, and, to
Division of Trauma, Acute Care, and Critical
Care Surgery, Baylor University Medical some extent, the recipient’s partner and future co‐parent. The psychological evalua‐
Center, Dallas, TX, USA tion has evolved from broad‐based screening in the first uterus transplant trial, where
3
Imperial College Healthcare NHS Trust,
the aim was to find suitable candidates for a novel experimental procedure with an
London, UK
4
Middlesex University, London, UK
unknown outcome, to a more directed screening with specific psychological domains
5
Department of Transplantation, Sahlgrenska for a complex infertility treatment with promising results. This report outlines a con‐
Academy, University of Gothenburg, sensus by investigators with pioneering experience in the field of the key factors and
Gothenburg, Sweden
6
suggests a framework for psychological evaluation of recipients and their partners as
Annette C. and Harold C. Simmons
Transplant Institute, Baylor University well as for live uterus donors before uterus transplant. We identify the main areas of
Medical Center, Dallas, TX, USA
particular value to the recipient screening (general psychological health, factors as‐
Correspondence: Liza Johannesson, Annette sociated with infertility, and medication adherence), the partner (general psychologi‐
C. and Harold C. Simmons Transplant
cal health and factors associated with infertility), and the living donor (psychological
Institute, Baylor University Medical Center,
3410 Worth St, Suite 950, Dallas, TX. health and motivation to donate, especially in the case of the nondirected donor).
Email: liza.johannesson@bswhealth.org
KEYWORDS
Funding information
Ferring
clinical research/practice, clinical trial, donors and donation: donor evaluation, mental health,
quality of life (QOL), recipient selection, vascularized composite and reconstructive
transplantation

1 | I NTRO D U C TI O N addition to recipient evaluation, approximately 35 living donor psy‐

During the past 5 years, uterus transplant (UTx) has emerged as a
treatment for uterine‐factor infertility in humans. To date, around
30 transplants were performed worldwide, and 10 children were
born. 1,2
Although the procedure is still considered experimental, the
field is rapidly evolving, and approximately 50 potential recipients
with partners were evaluated psychologically for participation in UTx
in different centers around the world.3‒5 The main cause of infertility
among the evaluated candidates for UTx was the congenital absence
of the uterus (Mayer–Rokitansky–Küster–Hauser syndrome).
Abbreviation: UTX, uterus transplant
chological assessments were conducted.5,11
The screening process before UTx for both recipients and donors
consists of a multidisciplinary evaluation.12 The psychological eval‐
uation usually takes place late in the screening process, as most un‐
suitable candidates are screened out before this step due to various
medical contraindications.12 The aim of the psychological evaluation
is 2‐fold. The first aim is to screen and eliminate clearly unsuitable
candidates who are unable to consent to the procedure or who have
psychiatric health or lifestyle factors that would make them unlikely
6‒10
In to adhere to the required medical treatment. Any assisted repro‐
ductive treatment also requires assessment of prospective parents
to ensure that the resultant child is not at serious risk of harm and

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© 2018 The American Society of Transplantation | 2641
and the American Society of Transplant Surgeons
2642 | JÄRVHOLM et al.
neglect.13 A secondary aim is to identify individuals who may require
additional support during the trial or require treatment before par‐
ticipating in the trial. Potential donors are evaluated across similar
domains, but the evaluation process also carefully explores standard
components of living donor evaluation, including primary motiva‐
tions for donation, especially for nondirected donors, and possible
coercion.
UTx is a unique form of transplant combining the fields of trans‐
plantation, reproductive medicine, and obstetrics and gynecology.
3
When the first UTx trial started assessing candidates in 2012, the
protocol of psychological screening was derived from both the trans‐
plant community, primarily from other non–life‐saving transplants,
such as hand and face,14,15 and from reproductive medicine.16,17
Unlike the candidates for hand and face transplant, who are often
traumatized before evaluation, the candidates for UTx appear psy‐
chologically stigmatized rather than traumatized by their infertility.
Due to the novelty of the treatment, it was difficult to initially de‐
termine the most important areas of psychological evaluation in this
patient group. Initial assessments aimed to identify candidates suit‐
able for a new experimental procedure with an unknown outcome.3
During the subsequent trials, focus shifted from psychological eval‐
uation before a novel experimental transplantat toward evaluating
candidates for an advanced and promising infertility treatment.
The evaluations of donors were taken from existing guidelines for
kidney and liver living donors.18,19 The work from the initial directed
11
donor evaluations in Gothenburg was modified, as nondirected
donors became the predominant donor population in the Dallas ex‐
perience.5 Guidelines from nondirected kidney donors20 were also
applied to enhance the evaluation of nondirected uterus donors.
This report provides a consensus by investigators with pioneer‐
ing experience in the field of the key factors to consider in the psy‐
chological evaluation of potential recipients and their partners, as
well as for live uterus donors before UTx.
2 | G E N E R A L P S YC H O LO G I C A L FAC TO R S
Demographic information such as age, race/ethnicity, education, oc‐
cupation, and relationship status is assessed in the initial screening
phase for both recipients and donors. In addition, during a compre‐
hensive psychological assessment, other factors such as religious
affiliation or spiritual beliefs, socioeconomic status, and cultural as‐
pects are explored. These factors can provide insight into potential
coping mechanisms. The socioeconomic factors are also important
to investigate to ensure that participation in UTx does not create an
undue financial burden on the recipient or the donor. Education is
considered to ensure that the individuals can understand the basic
aspects of the procedure. Occupational factors have been shown
5
to influence motivation for donation in nondirected donors. These
demographic factors have a general influence over various compo‐
nents of the overall assessment (ie, informed consent, support sys‐
tems) and thus should be reviewed.
3 | P S YC H O PATH O LO G Y
A large proportion of the general population has at some point ex‐
perienced a mental health condition; the annual prevalence in the
United States in 2016 was 18.3%. 21 We find no reason to exclude a
couple or donor from UTx simply because of a history of mood disor‐
der, anxiety, or situational psychological stress such as bereavement.
However, a comprehensive psychological evaluation is critical, not
only to determine the presence of current and past mental health
factors but also to identify mitigating factors such as help‐seeking
behavior, treatment response, and likely prognosis. A thorough as‐
sessment of psychopathology may require liaison with local mental
health providers or involved medical professionals. Obtaining collat‐
eral information from current mental health providers if a recipient,
partner, or donor is in active treatment is strongly recommended. At
this early stage of UTx, we propose that severe and enduring psy‐
chopathology, such as personality disorders, history of suicide, and
psychosis, be grounds for exclusion from the procedure due to the
uncertainty of the outcome and the risk of the psychological strain
of the procedure exacerbating the candidate’s preexisting condition.
4 | S U B S TA N C E A B U S E
Severe alcohol and illicit drug use are considered contraindications to
assisted reproductive treatments and organ transplantation. Severe
alcohol and drug use during pregnancy can have an adverse impact
on the developing fetus. Additionally, substance misuse can be as‐
sociated with a risk‐taking lifestyle, a contraindication for UTx unless
the condition was successfully treated and followed by a substantial
demonstrable period of abstinence. For other living organ donors,
substance abuse and/or dependence is considered a contraindica‐
tion, and this recommendation should be extended to uterus donors.
5 | R E L ATI O N S H I P S TA B I LIT Y
While it is unrealistic to be able to predict the exact factors that
contribute to a stable relationship, multiple factors are associated
with a relationship’s stability after parenthood, including length of
the relationship, age of the individuals, education level, emotional
support, and the ability to overcome difficulties together. 22 These
areas need to be addressed before UTx since the goal is parent‐
hood. The procedure will add strain, and therefore at least mod‐
erate relationship stability is required. Being in an unsatisfactory
relationship or not receiving support from the partner was shown
to strongly relate to low feeling of coherence. 23 In cases of recipi‐
ents without a partner, potential recipients are evaluated with the
same parameters as single women applying for other assisted re‐
productive treatment. In addition, the social network should be de‐
termined sufficient to provide support during the surgical recovery
specific to this method.
JÄRVHOLM et al.
6 | D O N O R S ’ FA M I LY PL A N N I N G
For living donors in a relationship, it is of utmost importance
to discuss family planning, especially if still of childbearing age.
Understanding where the donor and her partner are in terms of com‐
pleting their family is critical. For example, in a couple with older chil‐
dren, the male partner’s vasectomy would clearly suggest a choice
regarding additional children. An additional area of contemplation
is how the donor may feel in the event of an unexpected or antici‐
pated change in the current relationship (ie, death, divorce) and the
subsequent potential relationship with a new partner who may want
children. Similarly, for women of childbearing age without a partner,
it is important to discuss the possibility of later having a partner who
wants children. Ultimately, the goal of this part of the psychological
evaluation is to create dialogue about these hypothetical situations
to ensure donors are making an informed decision.
7 | S O C I A L S IT UATI O N
UTx is a long‐term commitment that affects the participant’s every‐
day life. The need for social support, both emotional and tangible,
will vary between individuals and over time. Social support is asso‐
ciated with better quality of life after heart transplants, 24 and this
may also be the case after UTx. Further, access to a social support
network indicates the ability to form a good working relationship
with the professional team that is essential for a successful out‐
come in UTx. 25 The purpose of evaluating social support in UTx is
to determine that sufficient support is present from the individual’s
perspective.
For donors, social support is also important. It generally cor‐
relates with positive psychological health, 26 and having access to
good social support during the donation and recovery process is es‐
sential. The recovery after a donor hysterectomy is expected to be
lengthier than after a simple hysterectomy. Donors need to be able
to handle recovery at home but also be prepared for any unantici‐
pated financial costs associated with the donation process, which
may include travel to the hospital and time out of work for medical
appointments, surgery, and recovery, especially if there are any sur‐
gical complications. The effect of these areas for donors may vary
in different cultural settings and health care systems but should be
discussed during evaluation.
8 | A DA P TI O N TO S TR E S S O R S A N D
CO PI N G S K I LL S
Participation in UTx comes with inherent risks and unanticipated
outcomes. Beyond the known risks of surgery, recipients risk an
unsuccessful transplant or unsuccessful transfer of the embryo,
with no pregnancy. The process for recipients and partners is
lengthy and involved, which can result in increased stress. Donors
are placed in a stressful situation when the desired outcome for the
| 2643
recipient does not occur, as well as when facing their own potential
health risks involved in the surgery. Thus, psychological evaluation
should include an assessment of how recipients, partners, and do‐
nors managed stressful events in the past, their coping styles, and
their overall level of resilience to stressors. Additionally, individu‐
als currently experiencing multiple life stressors would likely not
be good candidates, given the level of stress that could be experi‐
enced either as a recipient or a donor.
9 | CO PI N G W ITH C H I LD LE S S N E S S
Recipients and partners are likely to have parenthood as a com‐
mon goal. Many candidates previously tried to achieve parenthood,
mainly through gestational surrogacy or adoption. Some will even
have achieved parenthood, even through their own pregnancy.
How candidates as individuals and as a couple have dealt with in‐
fertility, losses, and trauma regarding parenthood needs to be ad‐
dressed, as it will affect expectations, capacity, and vulnerability in
relation to UTx as a fertility treatment. If there are existing children
in the relationship, questions should also include the children’s per‐
spective and explore the impact of possibly having children with
different origins and/or different genetic links to parents.
It is necessary to discuss how the individuals and couple arrived at
the decision to undergo UTx to understand if the decision was unan‐
imous or conflictual or involved any form of coercion. This should be
followed by a discussion on whether the couple had any other avail‐
able and acceptable options to achieve parenthood or UTx was the
only choice. The availability of alternative ways to achieve parent‐
hood will vary by country and cultural setting, in terms of both legis‐
lation and funding. This could place couples in a dilemma where the
only option available to them is not their financial or emotional first
choice, causing them to enter UTx with ambivalence.
10 | K N OW LE D G E A B O U T TH E
PRO C E D U R E
While the primary role of the psychological assessment is not to
inform participants about the medical procedure or outcome, the
clinical interview is a good way to assess whether they clearly un‐
derstand the various stages of the procedure. Discussions may re‐
veal unrealistic expectations and/or cognitive difficulties that could
negatively affect the outcome. 27 For living donors, it is important to
understand not only their own surgical risks but also the potential
risks and benefits to the recipient.
11 | I N FO R M E D CO N S E NT
Informed consent includes the person’s ability to understand the
known risks and benefits of the procedure, to weigh this informa‐
tion, and to reach and communicate this decision. In UTx, the ability
2644 | JÄRVHOLM et al.
to consent can be affected by a number of factors and needs to be
established on an individual basis. On rare occasions, there may be
doubts about a person’s mental state or cognitive capacity, in which
case further clinical assessments are indicated to clarify the extent
of the impairment. Decision‐making biases are probably more likely
when the person is likely to focus on the positive outcomes and
minimize the impact of any risks from the procedure. This could
lead to distress and resentment if the procedure is not successful.
As a result, it is important to explore how the recipient and partner
and even the donor will cope if the procedure is unsuccessful, if
the recipient and partner have alternative plans to achieve parent‐
hood or how they feel about childlessness. Finally, it is important
to determine that the woman and her partner or a potential donor
reached the decision to participate without coercion from anyone.
12 | A D H E R E N C E
Adhering to medical recommendations is a vital aspect of any transplant,
and previous compliance with medical regimens is commonly used to
predict posttransplant adherence. However, most patients opting for
UTx have little previous experience of complex care. Consequently, the
multidisciplinary team might struggle to determine an individual’s ca‐
pacity and willingness to comply with medical care. A way of addressing
this issue is to determine how candidates are reasoning about their tran‐
sition from being healthy to becoming dependent on health care. An
unrealistic or underestimating view of the candidate’s own effort and
contribution to the procedure is disadvantageous for the compliance.28
13 | TH E CO U PLE ' S R E L ATI O N TO TH E
DONOR
7‒10
UTx allows donation from both living and deceased donors.
When using a graft from a living donor, directed or nondirected,
the couple’s feelings toward the donor should be addressed. With
related donors, clinical observations suggest that the relationship
between the recipient and the donor is easier to navigate when the
donor spontaneously volunteers to donate rather than being asked.3
Most studies in other living donor situations found the relation‐
ship between the recipient and donor post transplantation to be
stable or stronger over time. 29 Yet, graft failure affects the donor
negatively.30 In the preoperative clinical interview, it is important to
address questions concerning the choice of donor and potential dif‐
ficulties, regardless of the treatment outcome.
14 | M OTI VATI O N FO R D O N ATI O N
Motivation for donation, especially for nondirected donors, is a
key component of the evaluation process. This area includes as‐
sessing one’s past history of medical altruism, such as past blood/
plasma donation or general organ donor status. Recommendations
made for living nondirected kidney donors suggest that motiva‐
tion to donate should be consistent with the donor’s past be‐
haviors. A donor should not demonstrate ambivalence, make an
impulsive decision, or have ulterior motives. 20 These recommen‐
dations apply to our patient population, too. In UTx, in which there
is a significant public interest and media coverage, careful assess‐
ment of potential ulterior motives related to this is another fac‐
tor to consider. While reasons for donation for a related donor
may appear obvious, such as a mother’s desire for her daughter to
carry a child and the possibility of becoming a grandmother, mo‐
tivations for nondirected donors may be more varied. The first six
nondirected uterus donors in the Dallas trial indicated the primary
reason to donate was the desire for a woman to carry her own
child, although other reasons included consistency with occupa‐
tional background, desire to participate in science, and a history
of past medical donation. 5 It is important to consider that there
could be other reasons to donate among the related donors, as
with the nondirected donors, and there is a risk in this setting that
the donor may feel obliged to donate. As in all organ donation,
there is a risk that motivation to donate is influenced by recipient
needs. To promote safe evaluation and care for living donors, an
independent donor advocate should be used and separate evalu‐
ating teams for donors and recipients considered.
15 | E VA LUATI O N TO O L S
In almost every psychological assessment before medical interven‐
tions, there are general areas and specific domains that relate to
the particular medical problem. Generic measures include mood
and quality of life measures. Specific areas of interest in this pa‐
tient group include measures of relationship stability and childless‐
ness. Table 1 shows a suggested framework for the psychological
evaluation of the UTx recipient and partner, with suggested ques‐
tionnaires and examples of areas for the clinical interview. The
suggested questionnaires in Table 1 are all widely used in transplan‐
tation and reproductive medicine, are easily accessible, are trans‐
lated into multiple languages, and are used in large nonpsychiatric
populations.
At this early phase of UTx, there is interest in using question‐
naires regarding other psychological areas for research purposes.
Nevertheless, it is important to clarify for the patient which areas
need to be assessed as an evaluation before UTx and what should be
considered research.
16 | CO N C LU S I O N
UTx, a breakthrough fertility treatment, has very promising out‐
comes to date. As the field is rapidly evolving, the knowledge of the
specific psychological domains of particular interest for UTx candi‐
dates has evolved. From our experience with recipients, we find it
useful to focus on five areas: general psychological health, factors
JÄRVHOLM et al. | 2645

TA B L E 1 Suggested framework for psychological evaluation of potential uterus transplant recipients, partners, and donors

Domain Questionnaires Clinical interview

Psychopathology • HADS • Psychological/psychiatric burden

• GAD−7 • Management of prior difficulties
• PHQ−9
• SCL−90
• PCL−5
• MMPI‐RF
• MBMD (multiple category)
Substance abuse • AUDIT • Experiences and attitudes toward drug use
• DUDIT
Quality of life • SF−36 • Plans to manage moving from independency to
• PGWB being dependent on health care
Marital relation • DAS • How the couple has managed strains in the past
Adaption to stressors and coping skills • COPE • Coping strategies used during other life events or
• Posttraumatic Growth Inventory crises
• MBMD
Childlessness • FertiQoL • Openness about childlessness
• FPI • Efforts to manage childlessness up until now
Treatment • Whether they learned about the project together
• Whether the relation with the donor has been
affected by the decision (and, if so, how)

HADS, Hospital Anxiety and Depression Scale; GAD‐7, Generalized Anxiety Disorder 7‐Item; PHQ‐9, Patient Health Questionnaire–9; SCL‐90,
Symptoms Checklist–90; PCL‐5, PTSD Checklist for DSM‐5; MMPI‐RF, Minnesota Multiphasic Personality Inventory‐2–Restructured Form; MBMD,
Millon Behavioral Medicine Diagnostic; AUDIT, Alcohol Use Disorders Identification Test; DUDIT, Drug Use Disorders Identification Test; SF‐36, 36‐
Item Short Form Survey Instrument; PGWB, Psychological General Well‐Being; DAS, Dyadic Adjustment Scale; COPE, Conor Davidson Resilience
Scale Brief; FertiQoL, Fertility Quality of Life Questionnaire; FPI, Fertility Problem Inventory.

associated with infertility, medication adherence, understanding of AC K N OW L E D G M E N T S

the procedure/coping strategies, and the ability to consent. For their
partners, the first two areas are relevant. For donors, we focused
primarily on psychological health and motivation to donate.
To date, the UTx candidates, recipients, partners, and donors are
psychologically stable and comparable to the normal population.
As the procedure becomes more widely available, a more hetero‐
geneous group of candidates is to be expected. For recipients, this
may include individuals with more complex personal histories be‐
fore UTx, such as hysterectomy due to cancer or birth complications,
women without a partner, or members of the transgender group.
For donors, other motives for uterus donation beyond the desire
for another woman to carry her own child will likely increase. These
motivations may include a personal desire of the donor to undergo a
hysterectomy due to subjective well‐being reasons.
As a result, the psychological assessment framework will need
to be flexible as the field continues to evolve. Future studies of
UTx should include both long‐term outcome data as well as in‐
formation on predictive factors to better improve the psycho‐
logical assessment. As UTx programs are established, topics such
as preferred donors and donor outcome as well as psychological
long‐term well‐being regarding depression and anxiety regardless
of outcome for all participants will be of particular interest. For
those where UTx leads to parenthood, it is relevant to compare
their well‐being to the well‐being of parents with other routes to
parenthood.
Dr Järvholm has received funding from the Ferring Pharmaceuticals
scholarship in memory of Robert Edwards.
D I S C LO S U R E
The authors of this manuscript have no conflicts of interest to dis‐
close as defined by the American Journal of Transplantation.
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How to cite this article: Järvholm S, Warren AM, Jalmbrant M,
Kvarnström N, Testa G, Johannesson L. Preoperative
psychological evaluation of uterus transplant recipients, partners,
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