Received: 2 December 2018 | Accepted: 29 January 2019

DOI: 10.1111/aogs.13562

REVIEW

The psychological importance of fertility preservation

counseling and support for cancer patients

Shanna Logan1,2,3 | Antoinette Anazodo1,2,4

1
School of Women and Children's
Health, Faculty of Medicine, University of Abstract
New South Wales – Sydney, Kensington, Infertility associated with cancer can have significant psychological impacts for can‐
NSW, Australia
2 cer patients and survivors, necessitating appropriate fertility‐related psychological
Kids Cancer Center, Sydney Children's
Hospital, Randwick, NSW, Australia support. This literature review details the psychological impact of infertility in cancer
3
Fertility& Research Center, Royal Hospital patients and survivors, and discusses fertility counseling as described in current in‐
for Women, Randwick, NSW, Australia
4
ternational guidelines; as either the provision of fertility information or psychosocial
Nelune Comprehensive Cancer
Center, Prince of Wales Hospital, Randwick, support. Fertility counseling has a role in assisting with fertility treatment decision‐
NSW, Australia making, but also in supporting patients with the emotional distress associated with
Correspondence potential infertility at the time of cancer diagnosis, and infertility in survivorship. The
Antoinette Anazodo, Kids Cancer Center, necessity of psychological support for fertility patients is outlined, alongside recom‐
Sydney Children's Hospital, Randwick, NSW,
Australia. mendations for adolescent and young adult patients, and family members of cancer
Email: Antoinette.Anazodo@health.nsw. patients involved in fertility and oncological care. Moving forward, clear guidelines
gov.au
for fertility counseling of cancer patients in the context of fertility preservation may
Funding information
AA's position is supported by CanTeen fund‐
be beneficial, in removing ambiguity as to whom conducts counseling, what
ing from the Federal Health Department. counseling involves, and what level of psychosocial support may be most effective in
supporting cancer patients longitudinally.

KEYWORDS
fertility counseling, fertility preservation, gynecological oncology, infertility, oncofertility

1 | I NTRO D U C TI O N
Oncological treatment can impact the fertility potential of cancer
1
patients. Damage to reproductive organs may be caused by the
disease itself or cancer treatment; such as through surgical removal
of reproductive organs, gonadotoxic chemotherapy treatments, or
radiotherapy over reproductive organs. 2 More data are required on
the gonadotoxic effects of novel therapies and immunotherapy. As a
result, prepubertal cancer patients may be at risk of delayed puber‐
3
tal growth, and female patients may experience early menopause,
uterine damage, and symptoms of sexual dysfunction. Male patients
may also experience hormonal abnormalities and sexual dysfunction
4
such as retrograde ejaculation or infertility. With increasing survival
rates for young cancer survivors, alongside increasing recognition
of the importance of patient‐centered care, focus must turn to how
best to support patients with their fertility‐related needs.
For those cancer patients who have yet to complete their fam‐
ily at the time of their cancer diagnosis, impacted fertility causes
a disruption to family planning. As such, there are currently multi‐
ple fertility preservation international guidelines that advocate for
timely discussion, referral to fertility specialist, and access to fertil‐
ity preservation and counseling for cancer patients of reproductive
age; including adolescents and young adults.5 Fertility preservation
practices include surgical procedures which allow for gonadal tissue
or gametes to be cryopreserved and allow patients the opportunity
to have a biological child after completing oncological treatment.
For women, preservation procedures include cryopreservation of
oocytes, embryos, ovarian tissue (more recently deemed non‐exper‐
imental), ovarian suppression and transposition. For male patients,
cryopreservation of semen is routinely undertaken for post‐pubertal
patients, with cryopreservation of testicular tissue an experimental
technique offered as part of a clinical trial for pre‐pubertal patients.

Acta Obstet Gynecol Scand. 2019;98:583–597. wileyonlinelibrary.com/journal/aogs

© 2019 Nordic Federation of Societies of Obstetrics | 583
and Gynecology
584 | LOGAN and ANAZODO
Which preservation options may be available to a particular pa‐
tient will be influenced by patient factors, such as gender, pubertal
status, relationship status, religious or cultural beliefs or available
funds to cover fertility treatment; illness factors such as prognosis,
stage of disease, time to commence oncological treatment, illness
type or site; clinician factors such as knowledge of referral path‐
ways, guidelines, confidence and expertise in managing fertility; and
treatment or service factors such as treatment type and risk to in‐
terrupted fertility, referral pathways, timely referral and availability
of services, and out‐of‐pocket expenses.6,7 These factors vary based
on the model of care implemented within any cancer center.8,9
The importance of giving patients the choice to undergo fertility
preservation, or receive information about fertility is not just medi‐
cal, but psychological. Literature indicates that impacted fertility is
regarded as a significant impact to later quality of life in survivor‐
ship and is associated with increased risk for poorer mental health.10
There is therefore a duty of care to better understand the psycho‐
logical needs of cancer patients, to protect against long‐term dis‐
tress. As such, this literature review seeks to detail the psychological
impact of infertility in cancer patients and survivors. Current recom‐
mendations for fertility counseling across all international fertility
preservation guidelines are reviewed, highlighting the role of fertil‐
ity counseling in assisting with fertility treatment decision‐making,
provision of fertility psycho‐education, and psychosocial counseling
for emotional support. The necessity of psychological support for
fertility is then outlined, with recommendations for support both at
diagnosis to manage stressors associated with fertility preservation,
but also long term, to assist survivors with the psychological impact
of altered family planning or infertility.
2 | P S YC H O LO G I C A L I M PAC T O F
I N FE RTI LIT Y
Due to the disruption in family planning experienced by cancer pa‐
tients of reproductive age when fertility is impaired, reproductive
concerns may be heightened.11,12 Reproductive concerns, reflecting
worries relating to a wide range of fertility factors, may differ based
on patient age, gender or stage of cancer treatment, 13
and are asso‐
ciated with impacts to sexual health, body image and poorer quality
of life.14-17 This disruption to the ability to form a biological child can
have negative consequences to a patient's identity, linked to a dis‐
ruption in the sense of self and life narrative. 18
This literature high‐
lights both the pervasiveness of reproductive potential to all areas
of a patient's life, alongside the perceived importance of fertility for
cancer patients.
It is not surprising then that disrupted fertility is related to emo‐
tional ill health or psychological distress. A recent systematic re‐
view highlights that fertility‐related psychological distress is both
prevalent and persistent in people with cancer; with negative emo‐
tional experiences reported from diagnosis through to survivorship
in relation to both threatened and impaired fertility for both male
and female patients.10 These findings point to the need for ongoing
Key message
Fertility counseling, as information provision and psycho‐
social support, is an important component of fertility care
that should be available to cancer patients undertaking fer‐
tility preservation at the time of cancer diagnosis, and at
later time‐points of family planning.
psychological assistance for cancer patients in managing initial fertil‐
ity treatment and reproductive health concerns longitudinally.
Clinically significant depression and anxiety have been reported
by patients accessing fertility treatment at the time of cancer diag‐
nosis, with distress greater than that experienced by non‐cancer fer‐
tility patients.19 Although this distress is likely multi‐factorial, related
to receiving a cancer diagnosis itself and not only fertility potential,
it highlights the need for additional psychological support for cancer
patients at the point of fertility preservation. Fertility factors, such as
early‐onset menopause20-24 and unfulfilled desire for a child17,21,25,26
are also associated with poorer mental health outcomes in survivor‐
ship. So there is a clear need for access to psychosocial support at all
oncological treatment time‐points, to lessen the impact of infertility.
3 | FE RTI LIT Y CO U N S E LI N G
There is variance worldwide in the availability and utilization of
fertility counseling in clinical practice27,28 and consequent vari‐
ance in clinical recommendations reported in fertility preservation
guidelines worldwide. A systematic search indicates that there are
currently 33 published fertility preservation guidelines, guideline
updates or clinical recommendation documents based on expert
opinion and review (see Table 1). These documents represent the
views of 19 differing organizations and two expert meetings, from
12 separate countries worldwide, international collaborations or
across Europe, with all but two documents published in English (one
in Swedish29 and one in Japanese30). Differences in health‐care sys‐
tems, availability of resources, provision of information and support‐
ive care practices may all differ based on region where guidelines are
utilized. These factors may influence the degree to which fertility
counseling is prioritized and available, and the consequent evidence
basis to inform on a clinical recommendation.
Guidelines also cover a variety of patient and treatment fac‐
tors. Approximately half provide information for female patients
only, and the other half for male and female patients together.
A wide range of ages are covered, from pre‐pubertal children to
adolescents and young adults (classified as from 14‐15 years up
to 25‐39 years), or reproductive‐age adults. Seven are tailored to
a particular medical condition or malignancy, while five are non‐
cancer‐specific, tailored to fertility or fertility preservation in pa‐
tients generally. Yet despite these differences, 29 out of the 33
TA B L E 1 Fertility preservation guidelines on fertility‐related psychological support
Country Date Organization Guideline title and author
Australia 2014 Clinical Oncology Fertility preservation for
Society of Australia. adolescents and young adults
(AYAs) diagnosed with cancer.
Guidance for health
professionals Clinical
Oncology Society of
Australia31
Austria and 2011 Fertility preservation Fertility preservation in
Germany network women—a practical guide to
FertiPROTEKT. preservation techniques and
therapeutic strategies in
breast cancer Hodgkin's
lymphoma and borderline
ovarian tumors by the fertility
preservation network
FertiPROTEKT von Wolff
et al.43
Canada 2015 Canadian Fertility and Fertility preservation in
Andrology Society. reproductive age woman
facing gonadotoxic treat‐
ments Roberts et al.44
Patient population Recommendation
Male and female, Recommendation: The potential psychological and psychosocial impact on AYA cancer
adolescent and survivors of undertaking, or not undertaking, fertility prevention measures should be
young adult regularly assessed. Survivors should be offered fertility counseling and psychological
cancer patients support.
LOGAN and ANAZODO
Females who have had cancer treatment should be counseled that they may have a
shortened reproductive lifespan.
AYA cancer survivors who are infertile should be provided with information about
assisted reproduction and other options for parenting such as sperm/egg/embryo
donation, surrogacy and adoption, and offered infertility counseling.
Note: As part of ongoing monitoring of survivors’ reproductive and sexual health, health
professionals should provide information about fertility options, sexuality, contracep‐
tion, breast feeding, relationships and inheritable cancers and refer patients to
counseling or support as required.
Oncology social workers and psychologists can assist in a general way, but where specific
knowledge of fertility preservation options is required a referral can be made to an
infertility counselor.
Helping a young patient to provide informed consent when faced with complex
information and limited time to make a decision requires age‐appropriate resources
and psychological and emotional support.
Female reproduc‐ Recommendation: All women between the ages of 14 and 40 y who receive chemother‐
tive age (14‐40 y) apy that could lead to a significant chance of disruption to their ovarian function should
cancer patients be counseled by a doctor trained in reproductive medicine on fertility preservation
methods, in agreement with the responsible oncologists
All applicable methods should be included in the counseling.
All counseling and treatments, including complications which occur, should be docu‐
mented in the records.
Female reproduc‐ Recommendation: After a diagnosis of cancer or another medical condition requiring
tive‐age cancer potentially sterilizing medical or surgical treatments in a reproductive‐age woman,
patients immediate referral to a reproductive endocrinology and infertility specialist is strongly
suggested to provide patients with counseling about their fertility and fertility
preservation management options. Note: Collaborative efforts between the fertility
specialist and the oncology team should aim to provide informed counseling about
future infertility and the suitability of individualized fertility preservation treatments.
Such counseling requires early referral and timely consultation with a fertility specialist,
with the provision of fertility preservation treatment in conjunction with the oncologi‐
cal management schedule. A multidisciplinary approach and education of oncology
professionals will help to ensure that cancer patients receive the appropriate fertility
preservation counseling and services.
(Continues)
|
585
TA B L E 1 (Continued)
Country Date Organization Guideline title and author
Europe 2012 The European Society The European Society of
of Breast Cancer Breast Cancer Specialists
Specialists recommendations for the
management of young women
with breast cancer. Cardoza
et al.32
Europe 2013 European Society for Cancer, pregnancy and fertility:
Medical Oncology ESMO Clinical Practice
(ESMO) Guidelines for diagnosis,
treatment and follow up.
Peccatori et al.47
INT 2012 ISFP Practice Fertility considerations in
Committee young women with hemato‐
logical malignancies. Jadoul &
Kim.39
Recommendations for fertility
preservation in patients with
lymphoma, leukemia and
breast cancer. ISFP Practice
Committee et al.48
Fertility preservation in young
women with breast cancer.
Klemp & Kim.45
Recommendations for fertility
preservation in patients with
Lymphoma. Schmidt &
Anderson.55
586
|
Patient population Recommendation
Female breast Recommendation: Counseling in young women at increased risk for invasive recurrence
cancer patients or breast cancer should include family planning issues (fertility and contraception), even
at diagnosis of a pre‐invasive lesion.
Before any treatment decision, young women must be advised to have fertility and
contraception counseling.
Note: In post‐diagnosis counseling, it is important not to overwhelm patients with too
much information and too many issues. Time for a second or third discussion should
be offered and referral for specific professional consultation should be facilitated
within the context of the individual oncological situation.
A number of websites are available and can be used for patient information and
counseling (www.fertiprotect.de, www.fertilehope.org, www.myoncofertility.org,
www.youngsurvival.org). Referral to the experienced multidisciplinary team is
essential to ensure the optimal risk/benefit discussion for the individual patient/
couple and coordination with planned anticancer treatment.
Psychosocial support should be routinely offered also to spouse and children with
directed interventions, if required.
Female cancer Recommendation: None stated Note: Young women desiring future fertility should be
patients counseled on available fertility preserving options before starting anticancer treat‐
diagnosed during ments. Counseling should be implemented soon after diagnosis, to allow prompt
a pregnancy referral to fertility specialists.
Female, young Recommendation: None stated Note: Fertility counseling should be adapted to
hematological individual patients and based on comprehensive knowledge on the efficacy, risks and
malignancy technical aspects associated with the different fertility preservation methods.
patients Fertility counseling should be given to all women with reproductive potential and
children and their parents, subjected to potentially gonadotoxic treatment.
Male and female Recommendation: All patients who desire to preserve fertility should be counseled and
reproductive‐age informed about currently available fertility preservation options by fertility specialists.
cancer patients
Young female Recommendation: None stated Note: Ideally, a fertility specialist should counsel women
breast cancer at the time of a cancer diagnosis.
patients
Male and female Recommendation: None stated Note: Psychosocial research studies have shown that
young cancer cancer‐related infertility has a high impact on the quality of life of cancer survivors.
patients at risk of Securing fertility before cancer treatment should thus have a high priority given its
primary ovarian psychological and social significance to the individual.
insufficiency or
testicular
dysfunction
(Continues)
LOGAN and ANAZODO
TA B L E 1 (Continued)

Country Date Organization Guideline title and author Patient population Recommendation

INT 2014 Center for International Clinical guide to fertility Male and female, Recommendation: None stated Note: Despite the fact that this method is readily
Blood and Marrow preservation in hematopoietic child and adult available, relatively inexpensive and entirely noninvasive, numerous studies have shown
Transplant Research cell transplant (HCT) HCT cancer that a significant proportion of male patients do not recall having been counseled
(CIBMTR) Late Effects recipients. Joshi et al. 56 patients regarding this method of fertility preservation.
LOGAN and ANAZODO

Working Committee
INT 2017 Cancer and fertility preserva‐
tion: international recommen‐
dations from an expert
meeting. Lambertini et al.40
In adolescent boys, sperm cryopreservation is underutilized, partly due to inconsisten‐
cies in fertility counseling and unclear guidelines regarding who should bank sperm.
Male and female Recommendation: All patients with potential interest in keeping their fertility should be
cancer patients referred to a fertility unit for adequate determination of risk of infertility, chances of
future conception and how to proactively preserve it. However, some cancer patients
will not require the help of a fertility clinic after cancer treatment. Since several
patient‐ and treatment‐related factors are associated with the risk of developing
infertility, the oncofertility counseling should be tailored to the individual patient.
In men, sperm cryopreservation is an easily accessible and widely available option in
>95% of patients and should be encouraged for those who want to preserve fertility.
On the contrary, from 2% to 65% of women undergo one of the available cryopreser‐
vation options: oncologists should discuss with them the fertility issues and secure
proper counseling in appropriate centers before cancer treatment.
Paucity of data is available on fatherhood after cancer. Although most of the published
data are reassuring, some recent conflicting results suggest a potential increased risk
of birth defects particularly among the children born closer to a paternal cancer
diagnosis, and caution should be taken in counseling these patients.
Embryo and oocyte cryopreservation are standard options for fertility preservation (III,
B). Vitrification showed a better performance than slow freezing (II, B). During
oncofertility counseling, patients should be aware that data on the success of these
strategies derive from infertile women in general and that a different ovarian response
to stimulation might be expected in cancer patients (IV, B).
Note: Oncofertility counseling should be individualized, discussing both the absolute
benefits of the proposed anticancer treatment (eg adjuvant chemotherapy or long
duration of endocrine therapy in young breast cancer patients at low risk of recur‐
rence) and the risk of infertility for each individual (based on patient‐related factors
[age, comorbidities, ovarian reserve in women]) and the sterilizing potential of the
treatment proposed).
Type of treatment and patient age are the most important factors to be taken into
account when counseling the patients.
Since several patient‐ and treatment‐related factors are associated with the risk of
developing infertility, the oncofertility counseling should be tailored to the individual
patient.
Greater effort is needed to improve both the communication between patients and
physicians about fertility risks and preservation options, and the collaboration among
oncologists and fertility specialists to give patients the opportunity to undergo
well‐timed and complete reproductive counseling.
Moreover, a better understanding of the factors that influence patients’ choice would
|

help physicians to improve the quality of their fertility counseling.

(Continues)
587
TA B L E 1 (Continued)
Country Date Organization Guideline title and author
Japan 2017 Practice of Fertility
Preservation for Cancer
Patients in the AYA
Generation. Sugishita30
Japan 2018 Japan Society of Clinical Practice Guidelines for
Clinical Oncology Fertility Preservation in
Pediatric, Adolescent and
Young Adults with cancer
Suzuki. 51
Korea 2017 The Korean Society for Fertility preservation for
Fertility Preservation patients with breast cancer:
The Korean Society for
Fertility Preservation clinical
guidelines. Kim et al.79
Fertility preservation for
patients with gynecological
malignancies: The Korean
Society for Fertility
Preservation clinical
guidelines. Lee et al.42
Fertility preservation for
patients with hematological
malignancies: The Korean
Society for Fertility
Preservation clinical
guidelines. Lee et al.80
NZ 2014 National Child Cancer Fertility preservation for
Network. people with Cancer: A New
Zealand Guideline. National
Child Cancer Network. 53
Scotland 2013 Scottish Intercollegiate Long‐term follow up of
Guidelines Network. survivors of childhood cancer:
A national clinical guideline.
Scottish Intercollegiate
Guidelines Network.33
588
|
Patient population Recommendation
Female reproduc‐ Recommendation: None stated
tive‐age (15‐39 y)
cancer patients
Recommendation: None stated Note: To carry out fertility preservation therapy, good
coordination between institutions is required as well as an environment that enables
the patient to make decisions rapidly through careful counseling.
Female breast Recommendation: None stated Note: Counseling about premature ovarian insufficiency
cancer patients and fertility issues is an overlooked part of the treatment plan for young premenopausal
women with breast cancer.
Female gynecologi‐ Recommendation: None stated Note: Physicians should provide timely information and
cal cancer patients appropriate counseling.
Female hematologi‐ Recommendation: None stated
cal malignancy
patients
Male and female, Recommendation: Damage to fertility due to cancer or its treatment may lead to
pre‐pubertal, emotional distress, as can the processes and procedures associated with fertility
pubertal and adult preservation and treatment
cancer patients Availability of and referral for psychosocial support is recommended.
Note: Females who have had cancer treatment at any age should be counseled that they
may have a shortened reproductive lifespan with an earlier menopause.
Male and female Recommendation: Fertility counseling should be provided for survivors of childhood
childhood cancer cancer.
survivors Women who have had radiotherapy treatment to a field which included the uterus are at
(>15‐25 y at increased risk of adverse pregnancy outcome. Pre‐conception counseling may be
diagnosis, 2‐5 y appropriate and women should be advised that pregnancy should be supervised in a
post treatment) high‐risk obstetric unit.
Men and women who have evidence of impaired fertility should be referred for specialist
assessment as they could benefit from assisted reproductive technology. This may
include specialist psychological support.Note: Pelvic radiotherapy is associated with
sexual dysfunction in adult women, and a systematic review found some limited
evidence for benefit of psychological intervention.
LOGAN and ANAZODO
(Continues)
TA B L E 1 (Continued)

Country Date Organization Guideline title and author Patient population Recommendation

Spain 2013 NA International Cancer and fertility preserva‐ Female young Recommendation: Best practice point: counseling on Fertility Preservation to all cancer
expert group. tion: Barcelona consensus cancer patients. patients. Note: Counseling should offer support for patients and provide better care by
meeting. Martinez et al. 54 understanding emotional needs, psychological predictors of distress and methods of
coping.
LOGAN and ANAZODO

Further research is needed to determine the impact of cancer treatments on markers of

OR and any correlation with future fertility, and counseling on likelihood of natural or
assisted conception should be done with caution.
The American Society of Clinical Oncology recommendations on fertility preservation in
cancer patients indicate that all patients receiving treatment with radiotherapy and
chemotherapy should be informed and counseling depends on age, disease, prognosis
and interval time for freezing.
Fertility preservation counseling should also consider issues such as time available and
team expertise.
Counseling should offer support for patients and provide better care by understanding
emotional needs, psychological predictors of distress and methods of coping.
Spain 2016 Servicio de Oncología SEOM Clinical Guideline of Male and female Recommendation: None stated Note: Patients who choose the option of fertility
Médica fertility preservation and reproductive‐age preservation should be referred to appropriate reproductive specialists within 24 h and
reproduction in cancer (15‐39 y) cancer to a mental health professional to assist with complex decision‐making if needed.
patients. Muñoz et al.46 patients. Additional fertility counseling for women who have a BRCA1 or BRCA2 mutation (or are
at high risk of having this) is warranted to educate them about the available fertility
preservation options in the context of their unique concerns.
Spain 2017 International Society Update on fertility preserva‐ Male and female Recommendation (including non‐cancer): Several oncological and non‐oncological
for Fertility tion from the Barcelona fertility preserva‐ diseases may affect current or future fertility, either due to the disease itself or to
Preservation–ESHRE– International Society for tion patients. gonadotoxic treatment, and need an adequate fertility preservation approach. These
ASRM Expert Fertility Preservation‐ESHRE‐ patients should be counseled regarding potential fertility loss and should be referred to
Working Group. ASRM 2015 expert meeting: fertility specialists to discuss options for fertility preservation and current results. Note:
indications, results and future There is general consensus on the need to provide counseling about currently available
perspectives. Martinez et al.81 fertility preservation options to all individuals wishing to preserve their fertility
Several techniques for fertility preservation are well established, providing physicians
involved in fertility preservation with up‐to‐date knowledge and counseling.
Moreover, new perspectives to tackle fertility preservation are being developed, which
may further help clinicians provide adequate counseling.
Sweden 2019 On behalf of the Work National Guidelines and Male and female Supportive care by a psychologist or counselor is recommended to assist patients and
Group UNGA multilingual age-adapted young (child and their families in decision-making. The guidelines also specifically recommend that
(YOUNG) for the patient brochures and videos adolescent) cancer fertility counseling is offered to evaluate opportunities for undergoing FP after
Swedish Association as decision aids for fertility patients. completion of cancer treatment, whenever FP was not possible or performed before
of Local Authorities preservation of children and the initiation of cancer treatment.
and Regions, SALAR teenagers with cancer- a
(Sveriges Kommuner multidisciplinary effort to
och Landsting, SKL). improve children's informa‐
tion and access to fertility
preservation in Sweden.
|
589

(Continues)

TA B L E 1 (Continued)
Country Date Organization Guideline title and author
Sweden 2015 Sweden's Measures to preserve
Municipalities and reproductive ability of young
County Councils patients with cancer—promo‐
tion of equal care for young
people at risk of treatment‐in‐
duced infertility. Sweden's
Municipalities and County
Councils. 29 Rodriguez-
Wallberg et al.38
UK 2013 National Institute for Fertility problems: assessment
Health and Care and treatment (Clinical
Excellence (NICE) Guidelines 156). National
Institute for Health and Care
Excellence (NICE).34
UK 2014 NA Expert group Guidelines for the first‐line
within the UK management of classical
Hodgkin lymphoma. Follows
et al. 82
UK 2018 British Fertility Society. Fertility preservation for
medical reasons in girls and
women: British Fertility
Society policy and practice
guidelines. Yasmin et al. 5
590
|
Patient population Recommendation
Male and female Recommendation: It is also important that the patients and the families are offered
young (child and supportive care by a professional (psychologist counselor, psychosocial worker) to assist
adolescent) cancer patients and parents in making their decisions.
patients. A specific recommendation is given to offer fertility counseling to evaluate later chances
to undergo fertility preservation under survivorship follow‐up health care, whenever
it was not possible to perform this before initiation of cancer treatment, due to the
frequent need for immediate start of cancer treatment and/or very young age of the
patient at time of cancer treatment.
Male and female Recommendation (including non‐cancer): People who experience fertility problems
fertility patients. should be offered counseling because fertility problems themselves, and the investiga‐
tion and treatment of fertility problems, can cause psychological stress
Counseling should be offered before, during and after investigation and treatment,
irrespective of the outcome of these procedures.
Counseling should be provided by someone who is not directly involved in the manage‐
ment of the individual's and/or couple's fertility problems.
Male and female Recommendation: None stated
Hodgkin
lymphoma
patients.
Female, child and Recommendation (including non‐cancer): Discuss fertility preservation as early as
adult, fertility possible in the cancer treatment pathway.
preservation Refer women to a trained counselor, both before fertility preservation and before use of
patients. stored material (Good practice point).
Offer counseling, both before fertility preservation and before use of stored material
(Good practice point).
Note: The guideline recommends a multidisciplinary approach in counseling women and
girls about the risk to their fertility and available techniques. The role of psychological
support in assisting women and girls with decision‐making is highlighted.
Embryo cryopreservation is suitable for women in a relationship where both partners
consent to creation and storage of embryos; counseling should address the require‐
ment for both partners to consent to the use of embryos in any future fertility
treatment.
The role of psychology and counseling extends beyond decision‐making. Ongoing
support needs to be available when patients experience the late effects of cancer
treatment and deal with infertility.
(Continues)
LOGAN and ANAZODO
TA B L E 1 (Continued)
Country Date Organization Guideline title and author
USA 2006 American Society of American Society of Clinical
Clinical Oncology Oncology recommendations
(ASCO). on fertility preservation in
cancer patients. Lee et al.41
2013 Fertility preservation for
patients with cancer:
American Society of Clinical
Oncology clinical practice
guideline update. Loren
et al.35
2018 Fertility Preservation in
Patients with Cancer: ASCO
Clinical Practice Guideline
Update. Oktay et al.36
Patient population Recommendation
LOGAN and ANAZODO
Male and female Recommendation: Individual factors such as disease, age, treatment type and dosages,
reproductive‐age and pre‐treatment fertility should be considered when counseling patients about the
cancer patients. likelihood of infertility.
Treatment‐related infertility may be associated with psychosocial distress and early
referral for counseling may be beneficial in moderately distressed people.
Note: The detailed counseling could be done by an infertility specialist.
The oncologist should routinely offer a referral for psychological counseling when a man
or woman has moderate to severe distress about potential infertility.
Research on infertility patients has shown that structured, cognitive‐behavioral
counseling can reduce anxiety and depression.
Male and female Recommendation: Refer patients to psychosocial providers if they experience distress
pediatric and adult about potential infertility. Ideally at the time of diagnosis but also after treatment. Note:
cancer patients. Psychosocial providers such as social workers and psychologists can be particularly
helpful when a patient is distressed about potential infertility
Psychosocial providers can assist patients and families in the decision‐making process
about fertility preservation and disposition of stored gamete options that are morally
and ethically acceptable to them.
Discussion point with patients; Many patients find cancer treatment‐related infertility
distressing. There is a lot to think about in addition to cancer. You can be referred to a
counselor, if that would be helpful. Many of the reproductive centers also have
counselors available to discuss these issues, so you may be able to see someone while
there for your consultation.
Male and female Recommendation: Refer patients to psychosocial providers when they are distressed
pediatric and adult about potential infertility.
cancer patients. To preserve the full range of options, fertility preservation approaches should be
discussed as early as possible, before treatment starts. The discussion can ultimately
reduce distress and improve quality of life. Another discussion and/or referral may be
necessary when the patient returns for follow up after completion of therapy and/or if
pregnancy is being considered.
(Continues)
|
591
 592
|

TA B L E 1 (Continued)

Country Date Organization Guideline title and author Patient population Recommendation

USA 2013 Practice Committees of Fertility preservation in
American Society for patients undergoing
Reproductive gonadotoxic therapy or
Medicine (ASRM) and gonadectomy: a committee
the Society for opinion. Practice Committees
Assisted of ASRM and SART.37
Reproduction (SART).
2013 Mature oocyte cryopreserva‐
tion: A guideline. Practice
Committees of ASRM and
SART.49
2014 Ovarian tissue cryopreserva‐
tion: A committee opinion.
Practice Committees of
ASRM and SART.83
Male and female Recommendation (including non‐cancer):
gonadotoxic Patients facing treatments likely to impair reproductive function deserve prompt
therapy fertility counseling regarding their options for fertility preservation and rapid referral to an
patients. appropriate program.
Fertility‐preservation programs should have prompt access to appropriately trained
mental health professionals to counsel patients and help them navigate what is
frequently a difficult decision‐making process.
Patients preparing to undergo gonadotoxic medical therapy or radiation therapy or
gonadectomy should be provided with prompt counseling regarding available options
for fertility preservation.
Counseling of patients pursuing fertility preservation should include a discussion of all
methods of fertility preservation as well as alternatives, such as the use of donor
gametes, donor embryos, and adoption.
Because of the sensitive and urgent nature of fertility preservation, a team approach to
patient counseling is recommended. Ideally, if time permits, patients should meet with
physicians, nurses and mental health professionals over several visits in order to
discuss fertility‐preservation options. This allows for a more comprehensive evalua‐
tion to explore and understand the psychosocial and medical needs of each patient.
Female fertility Recommendation (including non‐cancer): In patients facing infertility due to chemo‐
preservation therapy or other gonadotoxic therapies, oocyte cryopreservation is recommended with
patients. appropriate counseling.
Female fertility Recommendation (including non‐cancer): None stated.
preservation
patients.
LOGAN and ANAZODO
LOGAN and ANAZODO
documents reference “counseling” or “fertility counseling”, with
approximately two‐thirds (n = 20) reporting a clinical recommen‐
dation specific to fertility counseling, indicating that universally
counseling is an important component of the fertility preservation
process.
Most recommendations are for counseling at the time of can‐
cer diagnosis or initial fertility treatment commencement, opposed
to fertility support after oncological treatment. Some guidelines
reference childhood cancer survivors, or give mention to the ben‐
efit of follow‐up counseling after oncological treatment.5,29,30,32-37
However, there are reported differences on when these follow‐
up consultations should occur; eg based on medical treatment
time‐point, patient family planning preferences or patient levels of
infertility distress. Given variance in patient factors, some recom‐
mendations are made for counseling to be personalized to an indi‐
39-41
vidual. This lack of consistency between guidelines may make
it difficult for clinicians to be guided in whether repeated fertility
counseling may be beneficial for a particular patient, and the most
appropriate time‐point to re‐engage with fertility counseling.
Within current guidelines, fertility counseling often refers to
the consultation where threatened fertility is initially discussed, by
a medical practitioner42 or reproductive specialist,41,43-46 or simply
reports on counseling as the provision of information without ref‐
erence to counselor expertise.32,33,39,40,47-49 Fertility counseling, as
a fertility information consultation, sits in line with the internation‐
ally recommended best‐practice approach; for timely discussion and
provision of information by a medical team. Research suggests that
fertility counseling delivered by a fertility specialist, as opposed to
an oncologist, is associated with better psychological health and re‐
duced regret in those patients who undertook fertility preservation
compared with those who did not.50 This finding is likely because
provision of fertility information and increased knowledge lowers
psychological distress15 and therefore clinicians with greater fertil‐
ity expertise during a fertility consultation may be better equipped
to respond to reproductive concerns. Moreover, guidelines recom‐
mend that increased collaboration between oncology and fertility
experts, or a multidisciplinary approach, will increase the opportu‐
37,40,44,51
nity for timely and complete fertility counseling to occur.
However, fertility counseling by way of medical information pro‐
vision is a different concept to fertility counseling, being the thera‐
peutic exploration of reproductive concerns and fertility treatment
needs by a clinician with mental health training.52 Counseling by
mental health clinician5,29,31,35,37,53 or the importance of psycho‐
33,34,38,41,46,54
logical support was only noted within one‐third of
the guidelines or recommendation documents. Some purely note
the detrimental psychological effects of infertility or psychological
impact when counseling is inadequate, without providing further
recommendations for how psychological counseling should then be
implemented.55,56 The American Society of Clinical Oncology guide‐
lines note that patients who are moderately distressed regarding
35,36,41
their fertility should be referred to psychosocial clinicians.
However, there is no reference to how this distress should be as‐
sessed; what questions should be asked by medical clinicians (who
| 593
may or may not be trained in mental health assessment) to determine
level of distress, nor recommendations for standardized measures
which could be used meaningfully by medical clinicians for deter‐
mining a clinical cutoff point for referral. There is only one recom‐
mendation for the content of psychological counseling that could be
implemented, with evidence for the benefit of cognitive behavioral
therapy to reduce anxiety and depression41; and one recommenda‐
tion that counseling should not be conducted by a clinician involved
in fertility management,34 which may assist a patient to confiden‐
tially discuss their thoughts or concerns regarding all aspects of
treatment.
Some interventions using the presence of a psychologist at the
time of fertility preservation indicate that this process may be anx‐
iety provoking, resulting in an increase in already heightened state
anxiety.57 A heightened emotional response in this setting is not a
deterrent for engaging in counseling to explore concerns, but rather
indicates that heightened emotions such as anxiety are common,58
given the emotional impact of interrupted fertility and difficulties
in fertility treatment decision‐making at this time‐point. Indeed,
patients reported appreciating the opportunity to explore these
painful feelings at the time of fertility treatment.57 Coupled with re‐
sults suggesting poorer mental health in those patients with cancer
accessing cancer treatment at initial fertility preservation consulta‐
tions, compared with non‐cancer patients,19 these findings highlight
the necessity of supportive psychological care to ensure cancer
patients are able to manage the inherent stressors of this process.
Moreover, care delivered by a clinician trained in management of
mental health is advantageous, to better assess and treat psycho‐
logical distress.
4 | FE RTI LIT Y PR E S E RVATI O N S U PP O RT
Managing fertility preservation treatment at the time of cancer di‐
agnosis or after oncological treatment can be a complex emotional
and medical process. It is not surprising therefore that patients
may report feeling overwhelmed and ill‐equipped to manage this
complex multi‐step decision‐making process. The decision to un‐
dertake fertility preservation is further complicated by the con‐
current distress of a cancer diagnosis and stresses of managing
treatment planning and preparation. 58 As such, some research in‐
dicates that for female patients fertility preservation is regarded
as one of the most difficult decisions ever made, 59 that there is
a desire for additional psychological support60 and the use of a
psychologist working collaboratively with fertility specialists is
perceived as helpful. 57
Those patients with a desire to conceive in the future perceive
fertility preservation counseling to be helpful;61 however, younger
or female patients are less likely to recall receiving fertility coun‐
seling in survivorship despite desiring a future family.62-65 This lack
of supportive care is concerning, given that unfulfilled desire and
interrupted fertility are linked with poorer mental health outcomes
in survivorship.10 Moreover, if clinicians make assumptions regarding
594 | LOGAN and ANAZODO
the importance of fertility for particular patients and do not pro‐
vide the opportunity for fertility discussions, fertility preservation
or access to psychological support, they cannot adequately ensure
they have protected against the long‐term psychological impact of
infertility.
There is growing evidence for the use of information resources
to assist with fertility preservation decision‐making, with a recent
systematic review regarding fertility preservation decision aid tools
as useful complements to fertility counseling.66 Decision aid tools
aim to assist patients in informing on options available and guide
decision‐making processes,67 and their use for cancer patients con‐
sidering fertility preservation is associated with reduced decision
regret,68 decisional conflict68,69 and greater patient satisfaction.70
Research has indicated positive benefits when using decision aid
tools alongside therapeutic fertility counseling in increasing fertility
knowledge confidence compared with counseling alone;71 however,
further research is needed to determine long‐term benefits on psy‐
chological health.
5 | P S YC H O LO G I C A L S U PP O RT
Fertility preservation counseling is not only beneficial in assisting
with treatment decision‐making, via lower decisional conflict or
regret,72 but has a significant impact on emotional health. A sys‐
tematic review has indicated that lack of fertility preservation coun‐
seling is associated with poorer quality of life and mental health
outcomes.73 Preliminary findings from a longitudinal intervention
(three counseling sessions) to assist complex decision‐making for
patients undertaking fertility preservation, indicate that patients
feel they are better equipped with skills to manage distress long
term, 58 which likely protects against the further development of
mental health difficulties. Research has yet to evaluate these find‐
ings in a planned randomized controlled trial to see whether this
psychological intervention has significant effects on mental health
compared with the standard treatment. However, although current
interventions are limited, these findings provide a promising insight
into how psychological supportive care may protect again the long‐
term impact of interrupted family planning and infertility.
It is also important to consider fertility support not only at the
time of cancer diagnosis and fertility preservation treatment de‐
cision‐making, but to consider support through to long‐term sur‐
vivorship. It may be difficult for young cancer patients at the time
of diagnosis to contemplate the future desire for a family in making
initial treatment choices.74 As such, ongoing support is required as
younger patients reach the point of family planning. Interrupted fer‐
tility may also disrupt future family planning potential and lead to
psychological distress. For example, early‐onset menopause is linked
with significant risk for depression. 20,21 As such, the ongoing oppor‐
tunity to access fertility counseling integrated into survivorship care
is imperative, to assess for risk factors and supportive care needs.
Given that current models of care do not provide concrete recom‐
mendations for continued access to fertility counseling through to
survivorship, further intervention research is needed, to assist cli‐
nicians in how to best support patients long term with interrupted
fertility.
Family members may also need fertility counseling or additional
emotional support with regard to a cancer patient's fertility. Given
that fertility preservation decision‐making for pediatric patients oc‐
curs with parental involvement, counseling for family members can
be equally important. Similarly, cryopreservation of gametes that
affect multiple people, such as a cancer patient and their partner
cryopreserving embryos, must consider counseling for all parties,
given that legal ownership is shared between all. 5 However, not only
is involvement of family members in fertility counseling beneficial
for information provision and shared decision‐making, but family
members may also experience fertility‐related distress relating to
the threat of not being able to be a parent or grandparent due to a
patient's infertility. As such, it is recommended that if family mem‐
bers present with fertility‐related psychological distress, that fertil‐
ity counseling would be beneficial to all parties.32,39,75,76
6 | CO N C LU S I O N
Although fertility counseling is recognized internationally in fertility
preservation guidelines as a component of care that is beneficial,
there are inconsistencies regarding what counseling involves or who
conducts it. As such, moving forward it may be useful for fertility
counseling to be better documented, as either the provision of in‐
formation pertaining to threat of infertility (delivered by the oncol‐
ogy treatment team), medical information on fertility preservation
techniques (by reproductive specialists), or fertility counseling as
psychosocial support (by psychologists, counselors, social workers
or mental health clinicians). Although a single counseling session
from any clinician may contain all of these components, given that
clinicians vary in their training and expertise, the consequent con‐
tent brought forth in a fertility counseling session and its primary
focus will differ. As all components are essential for appropriate
care, there is a risk that without a multidisciplinary approach, and
clear communication between clinicians, patients may not have the
opportunity for comprehensive fertility counseling and optimal care.
It is clear that the fertility preservation process, the threat of
infertility, interrupted family planning and infertility have a psycho‐
logical impact that necessitates additional care. Currently there is
no specific guideline for how fertility counseling can best be con‐
ducted with cancer patients, both at the time of fertility treatment
and beyond. Without this guidance it is difficult for clinicians to
best support patients, in determining what level of distress war‐
rants fertility counseling intervention, or what counseling should
include. There are guidelines for counseling infertility for patients
in the general community, released by the European Society for
Human Reproduction and Embryology.77,78 These may provide a
useful starting point for clinicians in guiding supportive psychosocial
care for cancer patients. However, given that cancer patients differ
in their fertility experiences; with greater psychological distress at
LOGAN and ANAZODO | 595

initial treatment, fertility treatment not occurring at the time of fam‐ 14. Incrocci L, Hop WCJ, Wijnmaalen A, Slob AK. Treatment outcome,
ily planning, and fertility treatments that may not be appropriate or body image, and sexual functioning after orchiectomy and radio‐
therapy for Stage I‐II testicular seminoma. Int J Radiat Oncol Biol
available to them due to contraindications with their cancer history,
Phys. 2002;53:1165‐1173.
a guideline tailored specifically for cancer patients could be benefi‐ 15. Carter J, Raviv L, Sonoda Y, Chi DS, Abu‐Rustum NR. Recovery is‐
cial moving forward. sues of fertility‐preserving surgery in patients with early‐stage cer‐
vical cancer and a model for survivorship the physician checklist. Int
J Gynecol Cancer. 2011;21:106‐116.
C O N FL I C T O F I N T E R E S T 16. Lehmann V, Gronqvist H, Engvall G, et al. Negative and positive
consequences of adolescent cancer 10 years after diagnosis: an
None declared. interview‐based longitudinal study in Sweden. Psychooncology.
2014;23:1229‐1235.
17. Wenzel L, Dogan‐Ates A, Habbal R, et al. Defining and measuring
ORCID reproductive concerns of female cancer survivors. J Natl Cancer Inst
Monogr. 2005;34:94‐98.
Shanna Logan https://orcid.org/0000-0003-2745-4531 18. Ussher JM, Perz J, (ACFST) TACaFST. Threat of biographical disrup‐
tion: the gendered construction and experience of infertility follow‐
Antoinette Anazodo https://orcid.org/0000-0002-5495-6062
ing cancer for women and men. BMC Cancer. 2018;18:1‐17.
19. Lawson AK, Klock SC, Pavone ME, Hirshfeld‐Cytron J, Smith
KN, Kazer RR. Prospective study of depression and anxiety in
REFERENCES female fertility preservation and infertility patients. Fertil Steril.
2014;102:1377‐1384.
1. Mansky P, Arai A, Stratton P, et al. Treatment late effects in
20. Bisseling KCHM, Kondalsamy‐Chennakesavan S, Bekkers RLM,
long‐term survivors of pediatric sarcoma. Pediatr Blood Cancer.
Janda M, Obermair A. Depression, anxiety and body image after
2007;48:192‐199.
treatment for invasive stage one epithelial ovarian cancer. Aust N Z
2. Rodriguez‐Wallberg KA. Principles of cancer treatment: impact
J Obstet Gynaecol. 2009;49:660‐666.
on reproduction In: Quinn G, Vadaparampil S, eds. Reproductive
21. Gorman JR, Malcarne VL, Roesch SC, Madlensky L, Pierce JP.
Health and Cancer in Adolescents and Young Adults. Dordrecht, the
Depressive symptoms among young breast cancer survivors: the
Netherlands: Springer, 2012:1‐9.
importance of reproductive concerns. Breast Cancer Res Treat.
3. Pacey AA. Fertility issues in survivors from adolescent cancers.
2010;123:477‐485.
Cancer Treat Rev. 2007;33:646‐655.
22. Ganz PA, Greendale GA, Peterson L, Kahn B, Bower JE. Breast
4. Nieman CL, Kazer R, Brannigan RE, et al. Cancer survivors and in‐
cancer in younger women: reproductive and late health effects of
fertility: a review of a new problem and novel answers. J Support
treatment. J Clin Oncol. 2003;21:4184‐4193.
Oncol. 2006;4:171‐178.
23. Parton C, Ussher JM, Perz J. Experiencing menopause in the con‐
5. Yasmin E, Balachandren N, Davies MC, et al. Fertility preservation
text of cancer: women's constructions of gendered subjectivities.
for medical reasons in girls and women: British Fertility Society
Psychol Health. 2017;32:1109‐1126.
policy and practice guideline. Human Fertility (Cambridge, England).
24. Carter J, Chi DS, Brown CL, et al. Cancer‐related infertility in survi‐
2018;21:3‐26.
vorship. Int J Gynecol Cancer. 2010;20:2‐8.
6. Logan S, Perz J, Ussher J, Peate M, Anazodo A. Clinician provision
25. Armuand GM, Wettergren L, Rodriguez‐Wallberg KA, Lampic C.
of oncofertility support in cancer patients of a reproductive age: a
Desire for children, difficulties achieving a pregnancy, and infertil‐
systematic review. Psychooncology. 2018;27:748‐756.
ity distress 3 to 7 years after cancer diagnosis. Support Care Cancer.
7. Logan S, Perz J, Ussher JM, Peate M, Anazodo A. A systematic
2014;22:2805‐2812.
review of patient oncofertility support needs in reproductive
26. Canada AL, Schover LR. The psychosocial impact of interrupted
cancer patients aged 14 to 45 years of age. Psycho‐Oncology.
childbearing in long‐term female cancer survivors. Psychooncology.
2018;27:401‐409.
2012;21:134‐143.
8. Gardino SL, Emanuel LL. Choosing life when facing death: under‐
27. Collins C, Tower R, Jogal S. Evaluation of the quality of fertility
standing fertility preservation decision‐making for cancer patients.
counseling at the time of treatment consent. Pediatr Blood Cancer.
Cancer Treat Res. 2010;156:447-458.
2013;60:S83.
9. Kim J, Deal AM, Balthazar U, Kondapalli LA, Gracia C, Mersereau
28. Grover NS, Deal AM, Wood WA, Mersereau JE. Young men with
JE. Fertility preservation consultation for women with cancer: are
cancer experience low referral rates for fertility counseling and
we helping patients make high‐quality decisions? Reprod Biomed
sperm banking. J Oncol Pract. 2016;12:465‐471.
Online. 2013;27:96‐103.
29. Åtgärder för att bevara reproduktionsförmågan hos unga – främ‐
10. Logan S, Perz J, Ussher J, Peate M, Anazodo A. Systematic review of
jande av likvärdig vård av unga som riskerar behandlingsorsakad in‐
fertility‐related psychological distress in cancer patients: informing
fertilitet Sammanfattning. [Measures to preserve the reproductive
on an improved model of care. Psycho‐Oncology. 2019;28:22‐30.
capacity of young people ‐ promotion of equivalent care of young
11. Gershenson DM, Miller AM, Champion VL, et al. Reproductive and
people at risk of treatment‐related infertility Summary.] Sweden:
sexual function after platinum‐based chemotherapy in long‐term
Sveriges Kommuner och Landsting, 2015, pp. 1–33.
ovarian germ cell tumor survivors: a gynecologic oncology group
30. Sugishita Y, Suzuki N. Practice of fertility preservation for cancer
study. J Clin Oncol. 2007;25:2792‐2797.
patients in the AYA generation. In Japanese. Gan To Kagaku Ryoho.
12. Ruddy KJ, Gelber S, Ginsburg ES, et al. Menopausal symptoms
2017;44:12‐18.
and fertility concerns in premenopausal breast cancer survivors:
31. Fertility preservation for AYAs diagnosed with cancer: guidance
a comparison to age‐ and gravidity‐matched controls. Menopause.
for health professionals. AYA cancer fertility preservation guid‐
2011;18:105‐108.
ance working group. Clinical Oncology Society of Australia: COSA,
13. Knapp CA, Quinn GP, Murphy D. Assessing the reproductive con‐
Sydney: Cancer Council Australia, 2014. https://wiki.cancer.org.au/
cerns of children and adolescents with cancer: challenges and po‐
australia/COSA:AYA_cancer_fertility_preservation
tential solutions. J Adolesc Young Adult Oncol. 2011;1:31‐35.
596 | LOGAN and ANAZODO
32. Cardoso F, Loibl S, Pagani O, et al. The European Society of Breast
Cancer Specialists recommendations for the management of young
women with breast cancer. Eur J Cancer. 2012;48:3355‐3377.
33. Scottish Intercollegiate Guidelines Network (SIGN). Long term fol‐
low up of survivors of childhood cancer. SIGN guideline no. 132.
Edinburgh: SIGN, 2013.
34. Fertility problems: assessment and treatment (Clinical Guidelines
156). National Institute for health and care excellence: NICE. 2013.
https://www.nice.org.uk/guidance/cg156
35. Loren AW, Mangu PB, Beck LN, et al. Fertility preservation for pa‐
tients with cancer: American Society of Clinical Oncology clinical
practice guideline update. J Clin Oncol. 2013;31:2500‐2510.
36. Oktay K, Harvey BE, Partridge AH, et al. Fertility preservation in
patients with cancer: ASCO Clinical Practice Guideline Update. J
Clin Oncol. 2018;36:1994‐2001.
37. Practice Committee of American Society for Reproductive
Medicine. Fertility preservation in patients undergoing gonado‐
toxic therapy or gonadectomy: a committee opinion. Fertil Steril.
2013;100:1214‐1223.
38. Rodriguez-Wallberg K, Borgström B, Thurin-Kjellberg A, Mörse H,
Giwercman A, Jarfelt M. National Guidelines and multilingual age-
adapted patient brochures and videos as decision aids for fertility
preservation of children and teenagers with cancer- a multidisci‐
plinary effort to improve children's information and access to fer‐
tility preservation in Sweden. Patient Population: Male and female
young (child and adolescent) cancer patients. Acta Obstet Gynecol
Scand. 2019;98:679‐680.
39. Jadoul P, Kim SS, on behalf of IPC. Fertility considerations in young
women with hematological malignancies. J Assist Reprod Genet.
2012;29:479‐487.
40. Lambertini M, Del Mastro L, Pescio MC, et al. Cancer and fertility
preservation: international recommendations from an expert meet‐
ing. BMC Med. 2016;14:1.
41. Lee SJ, Schover LR, Partridge AH, et al. American Society of Clinical
Oncology recommendations on fertility preservation in cancer pa‐
tients. J Clin Oncol. 2006;24:2917‐2931.
42. Lee S, Kim SK, Hwang KJ, Kim T, Kim SH. Fertility preservation
for patients with gynecologic malignancies: the Korean Society
for Fertility Preservation clinical guidelines. Clin Exp Reprod Med.
2017;44:175‐180.
43. von Wolff M, Montag M, Dittrich R, Denschlag D, Nawroth F,
Lawrenz B. Fertility preservation in women—a practical guide to
preservation techniques and therapeutic strategies in breast can‐
cer, Hodgkin's lymphoma and borderline ovarian tumours by the
fertility preservation network FertiPROTEKT. Arch Gyneco Obstet.
2011;284:427‐435.
44. Roberts J, Ronn R, Tallon N, Holzer H. Fertility preservation in re‐
productive‐age women facing gonadotoxic treatments. Curr Oncol.
2015;22:e294‐e304.
45. Klemp JR, Kim SS, Committee IP. Fertility preservation in young
women with breast cancer. J Assist Reprod Genet. 2012;29:
469‐472.
46. Muñoz M, Santaballa A, Seguí MA, et al. SEOM Clinical Guideline
of fertility preservation and reproduction in cancer patients (2016).
Clin Transl Oncol. 2016;18:1229‐1236.
47. Peccatori FA, Azim JHA, Orecchia R, et al. Cancer, pregnancy and
fertility: ESMO Clinical Practice Guidelines for diagnosis, treatment
and follow‐up. Ann Oncol. 2013;24:vi160‐vi170.
48. Committee IP, Kim SS, Donnez J, et al. Recommendations for fer‐
tility preservation in patients with lymphoma, leukemia, and breast
cancer. J Assist Reprod Genet. 2012;29:465‐468.
49. Practice Committees of American Society for Reproductive
Medicine; Society for Assisted Reproductive Technology. Mature
oocyte cryopreservation: a guideline. Fertil Steril. 2013;99:37‐43.
50. Letourneau JM, Ebbel EE, Katz PP, et al. Pretreatment fertility
counseling and fertility preservation improve quality of life in re‐
productive age women with cancer. Cancer. 2013;118:1710‐1717.
51. Suzuki N. Clinical Practice Guidelines for Fertility Preservation in
pediatric, adolescent, and young adults with cancer. Int J Clin Oncol.
2019;24(1):20‐27.
52. Norré J, Wischmann T. The position of the fertility counsel‐
lor in a fertility team: a critical appraisal. Hum Fertil (Camb).
2011;14(3):154‐159.
53. Fertility Preservation for People With Cancer: A New Zealand Guideline
(Version 3). New Zealand: National Child Cancer Network; 2017.
54. Martínez F, Devesa M, Coroleu B, et al. Cancer and fertility pres‐
ervation: Barcelona consensus meeting. Gynecol Endocrinol.
2013;29:285‐291.
55. Schmidt KT, Andersen CY, Committee IP. Recommendations for
fertility preservation in patients with lymphomas. J Assist Reprod
Genet. 2012;29:473‐477.
56. Joshi S, Savani BN, Chow EJ, et al. Clinical guide to fertility pres‐
ervation in hematopoietic cell transplant recipients. Bone Marrow
Transplant. 2014;49:477‐484.
57. Razzano A, Revelli A, Delle Piane L, et al. Fertility preservation pro‐
gram before ovarotoxic oncostatic treatments: role of the psycho‐
logical support in managing emotional aspects. Gynecol Endocrinol.
2014;30:822‐824.
58. Bradford A, Woodard TL. Novel psychological intervention for deci‐
sion support in women considering fertility preservation before can‐
cer treatment. J Adolesc Young Adult Oncol. 2017;6:348‐352.
59. Hershberger PE, Finnegan L, Pierce PF, Scoccia B. The decision‐
making process of young adult women with cancer who consid‐
ered fertility cryopreservation. J Obstet Gynecol Neonatal Nurs.
2013;42:59‐69.
60. Mancini J, Rey D, Préau M, Malavolti L, Moatti J‐P. Infertility in‐
duced by cancer treatment: inappropriate or no information
provided to majority of French survivors of cancer. Fertil Steril.
2008;90:1616‐1625.
61. Baysal O, Bastings L, Beerendonk CCM, et al. Decision‐making in
female fertility preservation is balancing the expected burden of
fertility preservation treatment and the wish to conceive. Hum
Reprod. 2015;30:1625‐1634.
62. Niemasik EE, Letourneau J, Dohan D, et al. Patient perceptions of
reproductive health counseling at the time of cancer diagnosis: a
qualitative study of female California cancer survivors. J Cancer
Surviv. 2012;6:324‐332.
63. Wright CI, Coad J, Morgan S, Stark D, Cable M. ‘Just in case’: the
fertility information needs of teenagers and young adults with can‐
cer. Eur J Cancer Care (Engl). 2014;23:189‐198.
64. Smith S, Davies S, Wright D, Chapman C, Whiteson M. The experi‐
ences of teenagers and young adults with cancer—Results of 2004
conference survey. Eur J Oncol Nurs. 2007;11:362‐368.
65. Chapple A, Salinas M, Ziebland S, McPherson A, Macfarlane
A. Fertility issues: the perceptions and experiences of young
men recently diagnosed and treated for cancer. J Adolesc Health.
2007;40:69‐75.
66. Wang Y, Anazodo A, Logan S. Systematic review of fertility pres‐
ervation patient decision aids for cancer patients. Psychooncology.
2019;28:459-467.
67. Garvelink MM, ter Kuile MM, Fischer MJ, et al. Development
of a Decision Aid about fertility preservation for women with
breast cancer in The Netherlands. J Psychosom Obstet Gynaecol.
2013;34:170‐178.
68. Peate M, Meiser B, Cheah BC, et al. Making hard choices easier: a
prospective, multicentre study to assess the efficacy of a fertility‐
related decision aid in young women with early‐stage breast cancer.
Br J Cancer. 2012;106:1053‐1061.
LOGAN and ANAZODO
69. Hoff HS, Brandon A, Mersereau JE. Fertility preservation decision
aid increases knowledge and decreases decision conflict. Fertil
Steril. 2015;1:e24‐e25.
70. Woodard TL, Hoffman AS, Covarrubias LA, et al. The Pathways
fertility preservation decision aid website for women with cancer:
development and field testing. J Cancer Surviv. 2018;12:101‐114.
71. Ehrbar V, Urech C, Rochlitz C, et al. Fertility preservation in young
female cancer patients: development and pilot testing of an online
decision aid. J Adolesc Young Adult Oncol. 2018;7:30‐36.
72. Chan JL, Letourneau J, Salem W, et al. Regret around fertility
choices is decreased with pre‐treatment counseling in gynecologic
cancer patients. J Cancer Surviv. 2017;11:58‐63.
73. Deshpande NA, Braun IM, Meyer FL. Impact of fertility preser‐
vation counseling and treatment on psychological outcomes
among women with cancer: a systematic review. Cancer.
2015;121:3938‐3947.
74. Crawshaw MA, Glaser AW, Hale JP, Sloper P. Male and female ex‐
periences of having fertility matters raised alongside a cancer diag‐
nosis during the teenage and young adult years. Eur Jf Cancer Care.
2009;18:381‐390.
75. Gupta AA, Edelstein K, Petrovic M, Smit SM, D'Agostino N.
Assessing information and service needs of adolescents and young
adults (AYA) at a large adult tertiary care cancer center. J Clin Oncol
Conference: ASCO Annual Meeting. 2011;29:e19515.
76. Logan S. Long‐term psychological impact of interrupted fertility
in cancer patients: a systematic review informing on an improved
model of care. Eur Med J Reproud Health. 2018;4:61‐62.
77. Gameiro S, Boivin J, Dancet E, et al. ESHRE guideline: routine psy‐
chosocial care in infertility and medically assisted reproduction—a
guide for fertility staff. Hum Reprod. 2015;30:2476‐2485.
| 597
78. Boivin J, Appleton TC, Baetens P, et al. Guidelines for counselling
in infertility: outline version. Hum Reprod. 2001;16:1301-1304.
https://doi.org/10.1093/humrep/16.6.1301
79. Kim H, Kim SK, Lee JR, Hwang KJ, Suh CS, Kim SH. Fertility pres‐
ervation for patients with breast cancer: the Korean Society for
Fertility Preservation clinical guidelines. Clin Exp Reprod Med.
2017;44:181‐186.
80. Lee D‐Y, Kim SK, Kim M, Hwang KJ, Kim SH. Fertility preservation
for patients with hematologic malignancies: the Korean Society
for Fertility Preservation clinical guidelines. Clin Exp Reprod Med.
2017;44:187‐192.
81. Martinez F, Andersen CY, Barri PN, et al. Update on fertility pres‐
ervation from the Barcelona International Society for Fertility
Preservation ESHRE‐ASRM 2015 expert meeting: indications, re‐
sults and future perspectives. Fertil Steril. 2017;108:407‐15.e11.
82. Follows GA, Ardeshna KM, Barrington SF, et al. Guidelines for
the first line management of classical Hodgkin lymphoma. Br J
Haematol. 2014;166:34‐49.
83. Practice Committee of American Society for Reproductive
Medicine. Ovarian tissue cryopreservation: a committee opinion.
Fertil Steril. 2014;101:1237‐1243.
How to cite this article: Logan S, Anazodo A. The
psychological importance of fertility preservation counseling
and support for cancer patients. Acta Obstet Gynecol Scand.
2019;98:583–597. https://doi.org/10.1111/aogs.13562