A review of factors affecting patient fertility preservation discussions & decision-making from the perspectives of patients and providers

Abstract

Women undergoing cancer treatments and their healthcare providers encounter challenges in fertility preservation (FP) discussions and decision‐making. A systematic review of qualitative research was conducted to gain in‐depth understanding of factors influencing FP discussions and decision‐making. Major bibliographic databases and grey literature in English from 1994 to 2016 were searched for qualitative research exploring patient/provider perspectives on barriers and facilitators to FP decision‐making. Two researchers screened article titles, abstracts and full‐texts. Verbatim data on research questions, study methodology, participants, findings and discussions of findings were extracted. Quality assessment and thematic analysis were conducted. The search yielded 74 studies dating from 2007 onwards; 29 met the inclusion criteria. Analysis revealed three types of barriers: (a) FP knowledge, skills and information deficits contributed to discomfort for providers and discontent for patients; (b) psychosocial factors and clinical issues influenced providers’ practices around FP discussions and patients’ decision‐making; and (c) material, social and structural factors (e.g., lack of resources and accessibility) posed challenges to FP discussions. Potential facilitators to FP discussions and decision‐making were also identified. A discussion of ways to improve physician's knowledge and facilitate women's decision‐making and access to FP is presented, along with areas for policy development and further research.

Full text

Eur J Cancer Care. 2019;28:e12945. wileyonlinelibrary.com/journal/ecc 
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https://doi.org/10.1111/ecc.12945
© 2018 John Wiley & Sons Ltd
1 | INTRODUCTION
Many cancer therapies have the potential to irreversibly compromise
women’s reproductive potential (Levine, Kelvin, Quinn, & Gracia,
2015). This has significant implications for young women who have
not yet achieved family‐building goals and who desire biological
children (Armuand, Wettergren, Rodriguez‐Wallberg, & Lampic,
2014). Systemic chemotherapy and radiation treatments can result
in higher risks of infertility, including diminished natural ovarian re‐
serve, early onset menopause, increased rate of uterine dysfunction
and acute ovarian failure (Duffy & Allen, 2009; Wallace, 2011; Wo
& Viswanathan, 20 09). Additionally, treatments for some hormone‐
receptive cancers may require prolonged endocrine therapy and a
delay in pregnancy, further limiting a woman’s reproductive capac‐
ity due to natural follicle depletion in the ovarian reserve with age
(Anderson & Wallace, 2011; Coccia et al., 2012). Surgic al treatment
Received:14August2017
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Revised:17Au gust2018
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Accepted :8September2018
DOI : 10.1111 /ecc .12945
FEATURE AND REVIEW PAPER
A review of factors affecting patient fertility preservation
discussions & decision‐making from the perspectives of
patients and providers
Corinne Daly1 | Selena Micic1 | Marcia Facey2 | Brittany Speller1 | Samantha Yee3 |
Erin D. Kennedy4,5 | Arden L. Corter1 | Nancy N. Baxter1,5
1Depar tment of Surger y, Li Ka Shing
Knowle dge Institute, St . Michael’s Hospit al,
Toronto, Ontario, Canada
2Leslie Da n Faculty of Pharma cy, University
of Toronto, Toronto, Ontario, Canada
3Factor‐Inwentash Faculty of Soc ial
Work, Universit y of Toronto, Toronto,
Ontario, Canada
4Depar tment of S urger y, Mount Sinai Health
System, Toronto, Ontario, Canada
5Dalla La na School of Public Health ,
University of Toronto, Toronto, Ontario,
Canada
Correspondence
Nancy N . Baxte r, St. Michae l’s Hospit al,
Toronto, ON, Canada.
Email: baxtern@smh.ca
Funding information
The Can adian Cancer Society (#7026 01).
Abstract
Women undergoing cancer treatments and their healthcare providers encounter
challenges in fertility preser vation (FP) discussions and decision‐making. A system‐
atic review of qualitative research was conducted to gain in‐depth understanding of
factors influencing FP discussions and decision‐making. Major bibliographic data‐
bases and grey literature in English from 1994 to 2016 were searched for qualitative
research exploring patient/provider perspectives on barriers and facilitators to FP
decision‐making. Two researchers screened article titles, abstracts and full‐texts.
Verbatim data on research questions, study methodology, participants, findings and
discussions of findings were extracted. Quality assessment and thematic analysis
were conducted. The search yielded 74 studies dating from 20 07 onwards; 29 met
the inclusion criteria. Analysis revealed three types of barriers: (a) FP knowledge,
skills and information deficits contributed to discomfort for providers and discontent
for patients; (b) psychosocial factors and clinical issues influenced providers’ prac‐
tices around FP discussions and patients’ decision‐making; and (c) material, social and
structural factors (e.g., lack of resources and accessibility) posed challenges to FP
discussions. Potential facilitators to FP discussions and decision‐making were also
identified. A discussion of ways to improve physician’s knowledge and facilitate
women’s decision‐making and access to FP is presented, along with areas for policy
development and further research.
KEY WORDS
cancer, decision‐making, facilitators, fertility preservation, patient‐provider perspectives,
systematic review

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for gynaecological cancers may require partial or complete removal
of the reproductive organs, thus reducing or eliminating a woman’s
ability to conceive and carry biological children.
Fortunately, advances in reproductive technologies have
provided women with options for fertility preservation (FP).
Clinical FP guidelines, including those from the American
Society of Clinical Oncolog y (ASCO), American Society for
Reproductive Medicine, Clinical Oncology Society of Australia,
National Institute for Clinical Excellence, the Royal College
of Physicians, the Royal College of Radiologist s and Royal
College of Obstetricians and Gynaecologists among others,
recommend that FP is discussed with all patients of reproduc‐
tive age, including options for referrals to fertility specialists
(AYA Cancer Fertility Preservation Guidance Working Group;
Ethics Committee of the American Society for Reproductive
Medicine, 2005; Loren et al., 2013; O’Flynn, 2014; Royal College
of Physicians, Royal College of Radiologists, & Royal College of
Obstetricians and Gynaecologists, 2007). Although discussions
about the effects of cancer treatment on fertility may be chal‐
lenging, evidence shows that young women with cancer want to
be informed about fertilit y issues ( Thewes et al., 2005; Thewes,
Meiser, Rickard, & Friedlander, 2003). Women seek support for
potential FP from their healthcare providers (Gorman, Usita,
Madlensky, & Pierce, 2011; Partridge et al., 200 4), and most
women prefer to make FP decisions in consultation with their
providers (Peate et al., 2011). However, research indicates that
women may receive limited information on fertility risks, and
only a small number are referred for fertility consults (Goossens
et al., 2014; Quinn, Vadaparampil, Lee, et al., 2009; Yee, Buckett,
Campbell, Yanofsky, & Barr, 2012).
Reviews addressing various aspects of fertility care for young
women with cancer have been published (Deshpande, Braun, &
Meyer, 2015; Goncalves, Sehovic, & Quinn, 2014; Goossens et al.,
2014; Howard‐Anderson, Ganz, Bower, & Stanton, 2012; Peate,
Meiser, Hickey, & Friedlander, 2009; Sobota & Ozakinci, 2014) and
provide insight into attitudes (Goncalves et al., 2014), fertility‐re‐
lated concerns (Howard‐Anderson et al., 2012; Peate et al., 20 09),
psychological well‐being and quality of life outcomes (Deshpande et
al., 2015; Sobota & Ozakinci, 2014), and preferences for receipt of
fertility‐related information (Goossens et al., 2014). A recent mixed‐
methods review synthesised factors that affect fer tility preser vation
care into broad extrinsic and intrinsic factors and explored patient
and provider perspectives (Panagiotopoulou, Ghuman, Sandher,
Herber t, & Stewart, 2018). However, there remains a gap in specific
examination of the convergences and divergences in providers and
patients’ FP experiences and perspectives, which are important for
understanding deliver y of appropriately targeted supports, as well
as a gap in understanding of facilitators of FP practice from the per‐
spective of health care providers.
Therefore, this systematic review aimed to extend research on
barriers and facilitators to FP discussions and decision‐making and
to highlight commonalities and differences between patients and
oncology healthcare providers’ perspectives. The review focused
on qualitative research in response to the growth of qualitative
literature in the health sciences and the need for examination and
inclusion of diverse forms of data in evidenced‐based practice
(Sandelowski, Barroso, & Voils, 20 07). By having a broad date range
for article inclusion, the review also assessed change in qualitative
themes over time.
2 | METHODS
2.1 | Search strategy/study selection
A systematic review of English language articles published between
Januar y 1994 and March 2016 wa s conducted. MEDL INE, PsycINFO,
CINAHL, the Cochrane Central and Embase were searched using a
combination of “cancer,” “cancer treatment,” “fertility‐preserva‐
tion” and “decision‐making” medical subject headings, text words
and synonyms (Supporting Information Table S1). Qualitative and
cross‐sectional questionnaire studies with open‐ended questions
(only open‐ended components were eligible for analysis) present‐
ing patient or healthcare providers’ experiences about and barriers/
facilitators to FP discussions and/or decision‐making were included.
Two researchers independently screened article titles, abstracts and
full‐text s. Reference lists of included articles were screened for rel‐
evant publications. A grey literature search (Supporting Information
Table S2) was conducted and content exper ts informed a compre‐
hensive list of additional resources to ensure all relevant studies
were identified.
2.2 | Quality assessment
Two researchers independently assessed the quality of included
studies using the Critical Appraisal Skills Program (CASP, 2013) for
qualitative studies and a modified version of the STROBE checklist
for cross‐sectional studies (von Elm et al., 20 07). These instruments
have been previously used for quality appraisal in systematic re‐
views (CASP, 2013; Peate et al., 2011). Discrepancies were resolved
through discussion with a third researcher. Quality assessment
scores were reviewed, and articles were classified as poor, medium
or high quality. Poor‐quality studies were excluded.
2.3 | Data extraction and analysis
Two researchers independently conducted data extraction and
analyses. Discrepancies were discussed with a third researcher and
consensus was achieved. Thematic analysis was conducted to iden‐
tify barriers and facilitators to FP decision‐making (Kastner et al.,
2012). Each paper was read multiple times to facilitate familiarity.
Verbatim data on research questions, study methods, sampling, par‐
ticipants, study contexts, findings and discussions of findings were
extracted. A previously designed t axonomy of influential factors in
shared decision‐making in general clinical settings was used to help
with development of the initial coding scheme (Légaré et al., 2006).

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Codes were generated from each study and then systematically
and iteratively compared across studies to develop a general coding
scheme. Reviewers discussed data that did not fit the scheme and
revised codes as necessary. Through an iterative analytic process of
identif ying codes and their contents, searching for commonalities
and differences in experiences and perspectives, and through dis‐
cussions within the research team, descriptive themes representing
barriers and facilitators to FP discussions and decision‐making were
identified.
3 | RESULTS
3.1 | Description of studies
Of the 5,102 records retrieved, 29 articles met inclusion criteria
(Figure 1). All include d studies were published after 2007. Twenty‐six
studies used a qualitative design (Armuand, Wettergren, Rodriguez‐
Wallberg, & Lampic, 2015; Corney & Swinglehurst, 2014; Crawshaw,
Glaser, Hale, & Sloper, 2009; Ehrbar et al., 2016; Garvelink et al.,
2013; Hershberger, Finnegan, Altfeld, Lake, & Hirshfeld‐Cytron,
2013; Hershberger, Sipsma, Finnegan, & Hirshfeld‐Cytron, 2016;
Keim‐Malpass et al., 2013; King, Quinn, Vadaparampil, Gwede, et
al., 2008a; King, Quinn, Vadaparampil, Miree, et al., 2008b; Kirkman
et al., 2013, 2014; Komatsu et al., 2014; Lee et al., 2011; Peddie et
al., 2012; Penrose, Beat ty, Mattiske, & Koczwara, 2012; Quinn &
Vadaparampil, 2009; Quinn et al., 2007; Quinn, Vadaparampil, King,
et al., 2009; Russell, Galvin, Harper, & Clayman, 2016; Snyder & Tate,
2013; Snyder, Thazin , Pearse, & Moinu ddin, 2010; Ussher, Cummin gs,
Dryden, & Perz, 2016; Vadaparampil, Quinn, King, Wilson, & Nieder,
2008; Wilkes, Coulson, Crosland, Rubin, & Stewar t, 2010) and three
used a survey design with open‐ended questions (Hill et al., 2012;
King, Quinn, Vadaparampil, Gwede, et al., 2008a; Niemasik et al.,
2012; Table 1). The included studies variously examined patients
and providers’ attitudes, experiences and perspectives, communica‐
tion practices, fertility concerns, referrals, counselling/information
provision, FP decision‐making and barriers and facilitators. Fourteen
studies included participants with mixed t ypes of cancers (Armuand
et al., 2015; Crawshaw et al., 2009; Ehrbar et al., 2016; Garvelink
et al., 2013; Gorman, Bailey, Pierce, & Su, 2012; Hershberger et al.,
2013, 2016 ; Keim‐Malpass et al., 2013; Niemasik et al., 2012; Peddie
et al., 2012; Penrose et al., 2012; Russell et al., 2016; Wilkes et al.,
2010; Yee, Abrol, McDonald, Tonelli, & Liu, 2012), seven included
breast cancer sur vivors (Corney & Swinglehurst, 2014; Hill et al.,
2012; Kirkman et al., 2013, 2014; Lee et al., 2011; Snyder & Tate,
2013; Snyder et al., 2010) and one included cervical cancer survivors
(Komatsu et al., 2014). Studies examining providers included medical
FIGURE 1 PRISMA diagram of
included articles

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TABLE 1 Characteristics of included studies reporting barriers that influence fertility preservation decision‐making
Author, year, location Method; s tudy design; data collection
Patient perspective Provider perspective
nSex Agea at Dx Agea at Study Cancer nSpecialty
Crawshaw, 2009, UK Qualitative; cross‐sectional; interviews 38 B15.9 21.5 Not limited – –
Snyder, 2010, USA Qualitative; cross‐sectional; interviews 52 F32.4 34.8 Breast – –
Wilkes, 2010, UK Qualitative; cross‐sectional; interviews 18 B21.8 35.6 Not limited – –
Lee, 2011, UK Qualitative; cross‐sectional; interviews 24 F<40 23–39 Breast – –
Gorman, 2012, USA Qualitative; cross‐sectional; focus
groups
22 F16.8 18–34 Not limited – –
Hill, 2012, Canada Mixed methods; cross‐sectional;
questionnaire
27 F30.7 30.7 Breast – –
Penrose, 2012, Australia Qualitative; cross‐sectional; interviews 25 B38.8 38.8 Not limited – –
Niemasik, 2012, USA Mixed methods; cross‐sectional;
questionnaire
1,041 F31. 8 41. 3 Leukaemia, HL
NHL, Breast, G I
– –
Keim‐Malpass, 2013, USA Qualitative; phenomenological analysis
of internet blogs
16 F31.7 NR Not limited – –
Garvelink, 2013, Netherlands Qualitative; cross‐sectional; interviews 34 F21–4 0 22–41 Not limited – –
Yee, 2012, Canada Mixed methods; cross‐sectional;
questionnaire
41 F33.1 NR Not limited – –
Hershberger, 2013, USA Qualitative; cross‐sectional; interviews 27 FNR 28.7 Not limited – –
Kirkman, 2013, Australia Qualitative; cross‐sectional; interviews 10 F31.4 35.7 Breast – –
Snyder, 2013, USA Qualitative; cross‐sectional; interviews 34 F32.1 34.1 Breast – –
Kirkman, 2014, Australia Qualitative; cross‐sectional; interviews 10 F31.4 35.7 Breast – –
Komatsu, 2014, Japan Qualitative; cross‐sectional; interviews 15 FNR 31.6 Cervical – –
Corney, 2014, UK Qualitative; cross‐sectional; interviews 19 F30.1 24–44 Breast – –
Armuand, 2015, Sweden Qualitative; cross‐sectional; interviews 21 B32.5 20–45 Not limited – –
Ehrbar, 2016, Switzerland Qualitative; cross‐sectional; focus
group
12 FNR 36.3 Not limited – –
Hershberger, 2016, USA Qualitative; cross‐sectional; interviews 27 FNR 19–4 0 Not limited – –
M. Russell, 2016, USA Qualitative; cross‐sectional; interviews 56 B26.6 32.5 Not limited – –
Quinn, 2007, USA Qualitative; cross‐sectional; interviews – – – – – 16 Oncologistsb
King, 20 08a, USA Qualitative; cross‐sectional; interviews
and focus groups
– – – – – 36 Oncology nursesb
(Continues)

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oncologists, hematologists, surgeons, obstetricians/gynaecologists
and oncology nurses and social workers (King, Quinn, Vadaparampil,
Gwede, et al., 2008a; King, Quinn, Vadaparampil, Miree, et al.,
2008b; Peddie et al., 2012; Quinn & Vadaparampil, 2009; Quinn
et al., 2007; Quinn, Vadaparampil, King, et al., 2009; Ussher et al.,
2016; Vadaparampil et al., 2008).
As rated against the CASP, more than half the qualitative studies
did not provide clear justification for their choice of design (Corney
& Swinglehurst, 2014; Crawshaw et al., 2009; Garvelink et al., 2013;
Keim‐Malpass et al., 2013; Kirkman et al., 2013, 2014; Komatsu et
al., 2014; Lee et al., 2011; Peddie et al., 2012), and the relationship
between researcher and participants was adequately considered in
only 10 studies (Armuand et al., 2015; Corney & Swinglehurst, 2014;
Keim‐Malpass et al., 2013; Kirkman et al., 2013; Komatsu et al., 2014;
Peddie et al., 2012; Penrose et al., 2012; Quinn et al., 2007; Quinn,
Vadaparampil, King, et al., 20 09; Wilkes et al., 2010; Supporting
Information Table S3). Despite these faults, all studies were of high
or medium quality. Therefore, none were excluded on the basis of
quality. The three sur vey studies scored well on the background,
study design, outcomes, interpretation and generalisability domains.
However, two areas, effor ts to address potential sources of bias and
justification for sample size, were not well reported by most studies
(Supporting Information Table S4).
3.2 | Findings
Three main themes characterising barriers to FP decision‐making
were identified across the 29 studies: (a) FP knowledge, skills and
information deficits, (b) psychosocial and clinical concerns and (c)
material, social and structural factors including economic and paren‐
tal status. Although not explicitly discussed in most included studies,
our analysis revealed several potential facilitators to FP discussions
and decision‐making.
3.2.1 | Barriers to FP discussion and decision‐
making
Knowledge, skills and information deficits
Analysis of provider perspec tives and experiences revealed knowl‐
edge, skills and information deficits were prevalent across all dis‐
ciplines. Studies reported providers have limited awareness of FP
procedures including the time required for completion, costs/
insurance coverage (King, Quinn, Vadaparampil, Gwede, et al.,
2008a; King, Quinn, Vadaparampil, Miree, et al., 2008b; Peddie et
al., 2012; Quinn & Vadaparampil, 20 09; Quinn et al., 2007; Quinn,
Vadaparampil, King, et al., 20 09; Ussher et al., 2016; Vadaparampil
et al., 2008), referral processes/locations of fertility clinics (Loren
et al., 2013; Quinn, Vadaparampil, Bell‐Ellison, Gwede, & Albrecht,
2008; Tschudin & Bitzer, 2009; Ussher et al., 2016) and limited
knowledge of practice guidelines and use of guidelines at their own
institutions (King, Quinn, Vadaparampil, Gwede, et al., 2008a; King,
Quinn, Vadaparampil, Miree, et al., 2008b; Quinn & Vadaparampil,
2009; Vadaparampil et al., 2008). Others reported receiving minimal
Author, year, location Method; s tudy design; data collection
Patient perspective Provider perspective
nSex Agea at Dx Agea at Study Cancer nSpecialty
King,2008b, USA Qualitative; cross‐sectional; interviews
and focus group
– – – – – 7 Oncology social workersb
Vadaparampil, 2008, USA Qualitative; cross‐sectional; interviews – – – – – 24 Paediatric Oncologistsc
Quinn, 2009, USA Qualitative; cross‐sectional; interviews – – – – – 54 Oncologistsc
Quinn and Vadaparampil, 2009,
USA
Qualitative; cross‐sectional; interviews – – – – – 24 Paediatric Oncologist sc
Peddie, 2012, UK Qualitative; cross‐sectional; interviews 34 BNR 30.5 Not limited 15 Cancer care professionalsb
Ussher, 2016, Australia Mixed methods; cross‐sectional; survey
and interviews
– – – – – 263 (Survey)
49 (Interviews)
Cancer care professionalsc
Notes. B: both; Dx: diagnosis; F: female; GI: gastrointestinal; HL: Hodgkin lymphoma; NHL: non‐Hodgkin lymphoma; NR: not reported.
aReported as mean age if available from primary study, otherwise reported as age range. bSingle‐centre participant recruitment. cMulti‐centre participant recruitment.
TABLE 1 (Continued)

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training on FP counselling—repor ting that what they knew was
learned on the job (King, Quinn, Vadaparampil, Miree, et al., 2008b;
Quinn, Vadaparampil, King, et al., 2009). Likewise, some studies re‐
ported that allied care providers such as oncolog y nurses and so‐
cial workers were not aware of FP and/or did not think about it, felt
they did not have enough training to initiate or conduct such dis‐
cussions and assumed physicians were engaging patients in discus‐
sions (King, Quinn, Vadaparampil, Gwede, et al., 2008a; King, Quinn,
Vadaparampil, Miree, et al., 2008b). Healthcare providers reported
feeling challenged by the complexity of FP options alongside dif‐
ferences in cultural and religious beliefs (Quinn & Vadaparampil,
2009; Quinn, Vadaparampil, King, et al., 2009; Vadaparampil et al.,
2008). Lack of knowledge and familiarity with FP likely contribute
to discomfor t with engaging patients in FP discussions (King, Quinn,
Vadaparampil, Miree, et al., 2008b; Quinn, Vadaparampil, King, et
al., 2009; Russell et al., 2016; Ussher et al., 2016; Vadaparampil et
al., 2008).
Studies also suggested how healthcare providers’ perceptions
might contr ibute to patients’ i nformation defi cits. Some provi ders did
not discuss fertility‐related matters with patients because they did
not perceive it was their responsibility (King, Quinn, Vadaparampil,
Gwede, et al ., 2008a; Kin g, Quinn, Vadapar ampil, Miree, e t al., 2008b;
Peddie et al., 2012; Quinn et al., 2007; Ussher et al., 2016). For exam‐
ple, in one study, surgeons perceived that such discussions were the
purview of oncologists who ostensibly have more clinical knowledge
about administered treatments that posed risks to fertility (Quinn et
al., 2007). Studies also suggested that healthcare providers may not
initiate FP discussions if they perceived infer tility risks were small,
cancer therapies would not affect fertilit y, and/or success rates of
FP technologies were low or ineffective (Peddie et al., 2012; Quinn
et al., 2007). The studies also suggested that providers may hesitate
to initiate FP discussions (Corney & Swinglehurst, 2014; Gorman et
al., 2012; King, Quinn, Vadaparampil, Gwede, et al., 20 08a; King,
Quinn, Vadaparampil, Miree, et al., 2008b; Peddie et al., 2012; Quinn
& Vadaparampil, 2009; Quinn et al., 2007; Vadaparampil et al., 2008;
Yee, Abrol, et al., 2012) when or if they perceived it was not high
priorit y for patients or if they perceived that patients’ fears about di‐
agnosis and treatment meant treatment and survival were patients’
main priorities.
These issues were also reflected in women’s experiences of
FP discussions and decision‐making. Participants reported they
either received no information or inadequate information to make
informed FP decisions (Armuand et al., 2015; Ehrbar et al., 2016;
Gorman et al., 2012; Hershberger et al., 2013; Niemasik et al., 2012;
Penrose et al., 2012; Russell et al., 2016; Wilkes et al., 2010). For
example, in some studies, women repor ted that they did not re‐
ceive adequate and/or reliable information about FP options, in‐
fertility‐related risks or risks of cancer recurrence associated with
fertility treatments (Armuand et al., 2015; Gorman et al., 2012;
Hershberger et al., 2013, 2016 ; Kirkman et al., 2013; Niemasik et
al., 2012; Penrose et al., 2012; Wilkes et al., 2010; Yee, Abrol, et al.,
2012). Studies revealed women struggled with managing conflicting
information coming from multiple clinicians involved in their care.
Some felt they had to choose between providers (Hershberger et
al., 2013; Lee et al., 2011) and that they had to “put [their] faith”
in one provider or the other (Hershberger et al., 2013). The expe‐
rience of receiving inadequate and confusing information exacer‐
bated women’s concerns about pregnancy and cancer outcomes
(Hershberger et al., 2013; Lee et al., 2011; Penrose et al., 2012).
When women turned to Internet sources to supplement informa‐
tion received from providers, they experienced difficulty finding
material relevant to their situations and expressed concerns about
reliability (Hershberger et al., 2013).
Psychosocial/clinical concerns
The synthesis showed that psychosocial factors such as physicians’
beliefs, assumptions and clinical concerns (e.g., poor prognoses,
treatment urgency) also influenced providers’ practices regard‐
ing FP discussions and women’s decision‐making (King, Quinn,
Vadaparampil, Gwede, et al., 2008a; Peddie et al., 2012; Quinn et
al., 2007; Ussher et al., 2016; Vadaparampil et al., 2008). Providers
expressed concerns about information overload and felt discussions
would be challenging because patients were vulnerable at the diag‐
nosis and pre‐treatment stages and unlikely to absorb detailed FP in‐
formation (King, Quinn, Vadaparampil, Gwede, et al., 2008a; Peddie
et al., 2012). They assumed these discussions, raised in the context
of cancer diagnoses, might exacerbate patients’ stress and anxiety
(King, Quinn, Vadaparampil, Miree, et al., 2008b; Peddie et al., 2012;
Quinn, Vadaparampil, King, et al., 2009; Ussher et al., 2016). Such
discussions might, for example, raise complex questions about he‐
redity, which could influence patients to pursue genetic testing and/
or confuse and heighten anxiety and distress potentially complicat‐
ing and/or delaying treatment (King, Quinn, Vadaparampil, Miree, et
al., 2008b).
Women expressed similar concerns. For example, women’s
decisions were informed by concerns about heredity and genet‐
ics (Hershberger et al., 2016) and they found FP decision‐making
stressful (Hershberger et al., 2013, 2016; Kirkman et al., 2013, 2014;
Lee et al., 2011; Peddie et al., 2012; Snyder & Tate, 2013). Women
also described feeling frightened and pressured by having to make
decisions quickly (Carty et al., 2014; CASP, 2013; Crawshaw, 2013;
Deshpande et al., 2015; Garvelink et al., 2013; Goossens et al.,
2014; Hershberger et al., 2013; Kastner et al., 2012; Kirkman et al.,
2013, 2014; Lee et al., 2011; Légaré et al., 2006; Peddie et al., 2012;
Quinn et al., 2008, 2007 ; Snyder & Tate, 2013; von Elm et al., 20 07).
Physicians’ uneasiness with treatment delays related to FP was mir‐
rored in patients’ accounts of decision‐making. Studies repor ted
that maximising sur vival (Armuand et al., 2015; Ehrbar et al., 2016;
Hershberger et al., 2016; Peddie et al., 2012; Quinn et al., 2007), un‐
certain prognosis (King, Quinn, Vadaparampil, Gwede, et al., 2008a;
Quinn, Vadaparampil, King, et al., 2009), concerns that treatment
delays might negatively impact long‐term sur vival (Lee et al., 2011;
Penrose et al., 2012; Snyder & Tate, 2013; Wilkes et al., 2010) and
iatrogenic effects of FP were primary considerations in women’s
decisions (Hershberger et al., 2016; Lee et al., 2011; Penrose et al.,
2012; Snyder & Tate, 2013; Wilkes et al., 2010). Although sur vival

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was patients’ primary priority (Crawshaw et al., 2009; Ehrbar et al.,
2016; Gorman et al., 2012; Keim‐Malpass et al., 2013; Komatsu et
al., 2014; Lee et al., 2011; Peddie et al., 2012; Penrose et al., 2012;
Snyder & Tate, 2013; Wilkes et al., 2010; Yee, Abrol, et al., 2012),
fertility, and correspondingly, the desire and hope of being a par‐
ent after cancer were also important to women (Ehrbar et al., 2016;
Hershberger et al., 2016; Niemasik et al., 2012; Penrose et al., 2012).
Fertility was perceived as a component of femininity and central to
a women’s identity (Ehrbar et al., 2016; Ussher et al., 2016). Women
also expressed apprehension about success rates of FP, effects of FP
technologies on the health of future children, vertical transmission
of cancer genes and the potential for cancer recurrence (Ehrbar et
al., 2016; Gorman et al., 2012; Hershberger et al., 2016; Komatsu
et al., 2014; Niemasik et al., 2012; Wilkes et al., 2010). The latter
was especially troubling for women with hormone receptive can‐
cers considering FP options requiring ovarian stimulation (Corney &
Swinglehurst, 2014).
Material, social and structural factors
Lack of FP‐related educational resources (King, Quinn,
Vadaparampil, Gwede, et al., 2008a; Quinn & Vadaparampil,
2009; Quinn et al., 2007; Quinn, Vadaparampil, King, et al., 2009;
Vadaparampil et al., 2008), time (Ehrbar et al., 2016; Hershberger
et al., 2016), accessibility to clinics (Hershberger et al., 2016; King,
Quinn, Vadaparampil, Gwede, et al., 2008a; Quinn, Vadaparampil,
King, et al., 2009), costs in regions without FP coverage, (Gorman
et al., 2012; King, Quinn, Vadaparampil, Gwede, et al., 20 08a;
King, Quinn, Vadaparampil, Miree, et al., 2008b; Niemasik et al.,
2012; Quinn & Vadaparampil, 2009; Quinn et al., 2007; Quinn,
Vadapara mpil, King, et a l., 2009; Snyde r & Tate, 2013; Vadapar ampil
et al., 2008), age (King, Quinn, Vadaparampil, Gwede, et al., 20 08a;
Peddie et al., 2012), marit al/parent status (Corney & Swinglehurst,
2014; King, Quinn, Vadaparampil, Miree, et al., 2008b; Lee et al.,
2011; Snyder & Tate, 2013) and culture/religion (Ehrbar et al.,
2016; Quinn & Vadaparampil, 2009; Quinn, Vadaparampil, King, et
al., 2009; Vadaparampil et al., 2008) were identified as additional
factors posing challenges to FP discussions and decision‐making.
Studies reported that oncologists found FP discussions awk ward
in part because they had no resources to refer to, and because
available resources were inappropriate for some patient popula‐
tion (Quinn & Vadaparampil, 2009; Vadaparampil et al., 2008).
Workload and shortage of time in clinical encounters exacerbated
impediments to FP discussions; healthcare providers said they did
not have enough time in clinical/diagnostic consultations to dis‐
cuss everything with patients (King, Quinn, Vadaparampil, Gwede,
et al., 2008a; Quinn et al., 2007). Likewise, women who received
information about FP described feeling rushed and experienced
difficulties in making decisions under constrained timelines
(Kirkman et al., 2013; Lee et al., 2011). With respect to accessibil‐
ity, some studies reported that there were no readily accessible
FP clinics, even if oncologists wanted to provide patients with op‐
portunities to pursue FP (King, Quinn, Vadaparampil, Gwede, et
al., 2008a; Quinn, Vadaparampil, King, et al., 2009).
The high costs of FP procedures and lack of insurance coverage
in some regions exacerbated inaccessibility to FP and served to in‐
hibit discussions with patients (King, Quinn, Vadaparampil, Miree, et
al., 2008b; Quinn & Vadaparampil, 2009). Providers in these regions
thought r aising FP may constit ute an ethical dile mma if patients co uld
not afford it (King, Quinn, Vadaparampil, Miree, et al., 2008b; Quinn
& Vadaparampil, 2009; Quinn, Vadaparampil, King, et al., 2009).
Notably, six provider studies from the United States identified costs
as a possible barrier to FP (King, Quinn, Vadaparampil, Gwede, et
al., 2008a; King, Quinn, Vadaparampil, Miree, et al., 2008b; Quinn &
Vadaparampil, 2009; Quinn et al., 2007; Quinn, Vadaparampil, King,
et al., 2009; Vadaparampil et al., 2008) compared with only three
survivor studies (Gorman et al., 2012; Niemasik et al., 2012; Snyder
& Tate, 2013). Although socio‐economic status, age, marital and par‐
ent status are material barriers to FP, clinicians’ assumptions about
patients based on these social categories represented additional
hurdles (Ussher et al., 2016). These assumptions not only affected
the nature and qualit y of information provided to patients but also
resulted in exclusion of patients from decision‐making. Studies re‐
ported that some younger women without (stable) partners did not
receive FP counselling or were told not to worry about reproductive
risks because treatment ef fect s would be temporar y (Ehrbar et al.,
2016; Niemasik et al., 2012; Penrose et al., 2012).
Along with costs, studies found age and marital status af fected
whether healthcare providers discussed or referred patients for
FP (King, Quinn, Vadaparampil, Gwede, et al., 2008a; King, Quinn,
Vadaparampil, Miree, et al., 20 08b; Peddie et al., 2012). For ex‐
ample, providers were less likely to raise FP with single women
(Hershberger et al., 2016; King, Quinn, Vadaparampil, Miree, et al.,
2008b). These women not only experienced time pressures, but
their decision‐making was complicated by the FP choices available
to them (Niemasik et al., 2012; Yee, Abrol, et al., 2012). “Older”
women felt that physicians assumed they would no longer be in‐
terested in having children, and “younger ” women felt neglected
vis‐a‐vis these discussions (Niemasik et al., 2012). Women who had
children felt clinicians placed less emphasis on FP (Lee et al., 2011;
Niemasik et al., 2012; Quinn et al., 20 07) and reported being told to
be satisfied with the children they already had (Kirkman et al., 2013;
Niemasik et al., 2012). Women without partners felt their concerns
were not adequately addressed during FP discussions (Corney &
Swinglehurst, 2014; Niemasik et al., 2012). Finally, cultural and re‐
ligious beliefs played a role in FP discussions (Ehrbar et al., 2016;
Quinn & Vadaparampil, 2009; Quinn, Vadaparampil, King, et al.,
2009; Vadaparampil et al., 2008).
3.2.2 | Facilitators to FP discussion & decision‐
making
Although not explicitly researched in most included studies, this
review revealed several potential facilitators to FP discussions
and decision‐making. For example, patient awareness of FP, in‐
terest in avoiding future regret and maintaining a sense of con‐
trol (Hershberger et al., 2016) were raised as critical drivers of FP

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DALY et AL.
discussions. FP discussions could also be enabled by healthcare
providers’ knowledge and skills, which may be improved through
educational interventions (King, Quinn, Vadaparampil, Miree, et al.,
2008b). Increased provider awareness and comfor t with FP issues
could enab le proactive and o pen discussions wit h patients (Gar velink
et al., 2013; Kirkman et al., 2013; Wilkes et al., 2010; Yee, Abrol, et
al., 2012). Some studies alluded to the importance of avoiding as‐
sumptions about patients’ fertilit y needs and desires based on social
status characteristics (Corney & Swinglehurst, 2014; Lee et al., 2011;
Niemasik et al., 2012). Patients noted their need for healthcare pro‐
viders to be willing to listen to their personal values and aspirations
(Kirkman et al., 2013), to be open to honest, non‐judgmental com‐
munication and to create environments that facilitate empowerment
(Hershberger et al., 2013).
Research indicates that informing patients of potential infertility
risks and FP options as early as possible could facilitate decision‐
making and improve patient experience (Crawshaw et al., 2009).
However, providers felt discussions should not be at the initial con‐
sultation and patients preferred that it was done at appointments
separate from those related to cancer management (King, Quinn,
Vadaparampil, Gwede, et al., 2008a; Kirkman et al., 2013; Lee et al.,
2011; Vadaparampil et al., 2008). Well‐timed discussions could give
patients the space to focus on understanding their diagnosis and
treatment before engaging with the complexities of FP (King, Quinn,
Vadaparampil, Gwede, et al., 2008a; Vadaparampil et al., 2008).
Finally, informing patients of ongoing risks throughout treatment
and follow‐up (Corney & Swinglehurst, 2014; Wilkes et al., 2010;
Yee, Abrol, et al., 2012), offering suggestions for reliable Internet
resources and experiential information such as support groups
(Garvelink et al., 2013) might facilitate FP decision‐making, improve
patient experiences and reduce regrets and distress. Indeed, a sig‐
nificant number of studies suggested the importance of social re‐
lationships as a key factor in FP decision‐making (Crawshaw et al.,
2009; Komatsu et al., 2014; Snyder & Tate, 2013; Snyder et al., 2010;
Wilkes et al., 2010). Additionally, widely available (e.g., at community
hospitals and cancer centres) patient educational resources, partic‐
ularly low‐literacy and culturally appropriate materials (King, Quinn,
Vadaparampil, Miree, et al., 20 08b; Vadaparampil et al., 2008), could
aid provider–patient communication and education (Ehrbar et al.,
2016; Ussher et al., 2016). Multidisciplinary, integrated cancer care
including specialised counselling services would be beneficial to
women’s experience of cancer care and suppor t FP decision‐mak‐
ing (Hill et al., 2012). Finally, access to financial supports for FP pro‐
cesses could improve accessibilit y to FP (Hershberger et al., 2016;
King, Quinn, Vadaparampil, Miree, et al., 2008b).
4 | DISCUSSION
This systematic review illuminates multiple inter‐related factors
constituting barriers and facilitators to FP discussions and deci‐
sion‐making among women undergoing cancer treatment and
healthcare providers. Spanning more than a decade, the research
included in this qualitative review shows that challenges in man‐
aging psychosocial, informational and structural elements of FP
discussions and decision‐making are persistent and transcend spe‐
cific approaches to FP.
This review highlights overlap between patient and providers’
perceptions of challenges in FP discussions and decision‐making.
Psychosocial and clinical factors such as diagnosis and treatment‐
related distress; survivorship, FP‐related iatrogenic and treatment
urgency concerns; material, social, and structural factors such as
single status, lack of and/or conflicting information; inaccessibility of
clinics and poor care coordination that sometimes resulted in insuf‐
ficient time to make FP decisions were common concerns.
These barriers interact with each other with broader health im‐
plications. For example, the high costs of FP procedures in some
health care systems (Rashedi et al., 2017) may engender erroneous
assumptions about patients’ socio‐economic status (ability to pay)
and result in information deficits for patients when physicians do
not raise FP. Notwithstanding physicians’ beliefs that raising FP in
the context of concerns about patients’ economic status presents an
ethical problem, avoiding discussions has implications for patients’
decision‐making and long‐term well‐being. The potential role of FP
cost as a barrier is applicable in regions that do not have insurance
coverage or government‐funded FP programs.
In addition to overlapping concerns, the review highlights an im‐
portant disconnect between patients and providers in their percep‐
tions of what patients want or need in the way of information and
advice about FP. For example, more provider‐ than survivor‐focused
studies mentioned costs as a possible barrier. Findings also suggest
that assumptions about marital status, age and other socio‐demo‐
graphic factors are driving providers’ discussions about FP, thereby
biasing clinical practice. In light of the variety of modern family sys‐
tems, extended ages for childbearing, and advances in FP technolo‐
gies, these assumptions need to be challenged. Equit able care would
be informing all women of childbearing age who are about to un‐
dergo cancer treatment of their right to FP information and suppor t.
Previous systematic reviews have focused on psychosocial
and quality of life‐related outcomes of women undergoing FP
(Deshpande et al., 2015; Sobota & Ozakinci, 2014), and apart from
one study (Panagiotopoulou et al., 2018) have focused solely on
barriers to FP practices. Through this synthesis, we were able to
validate the previous research on barriers and extend the research
on facilitators that positively influence healthcare providers FP
practice, such as training to increase awareness of FP practices and
partners, and reduce provider bias. Further work on inter ventions to
support FP practice and patients understanding of FP is needed. For
example, providing all patient s of childbearing age with a FP decision
aid as standard practice may help to overcome clinician barriers and
patients’ concerns with broaching the topic of FP. Educating health
practitioners on FP support channels and appropriate referrals may
address issues related to appropriate and timely care.
Further research is also needed on unique patient populations.
The majority of research focuses on breast cancer patients (Corney
& Swinglehurst, 2014; Hill et al., 2012; Kirkman et al., 2013, 2014;

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DALY et AL.
Lee et al., 2011; Snyder & Tate, 2013; Snyder et al., 2010), and more
research is needed for women with gynecologic and hematologic
malignancies, as these groups have unique FP needs and challenges.
Only one study considered LGBTQ populations or sexual orienta‐
tion in FP (Russell et al., 2016), and few studies mentioned moral
and ethical challenges pertaining to the cost and type of FP, among
others. Again, these issues point to FP knowledge/skills deficit s for
healthcare providers and complicating factors for some women.
The review suggest s the need for primary research that explicitly
addresses experiences of providers in smaller centres and commu‐
nity set tings where literature suggests access to FP resources and
FP knowledge/skills may var y (Clayman, Harper, Quinn, Reinecke, &
Shah, 2013). The ongoing ef forts by professional organizations such
as ASCO, the National Comprehensive Cancer Network and the
Oncofertility Consortium to develop resources and training programs
to improve knowledge related to FP for patients and professionals
are worth noting here. Finally, there was an under‐representation of
health professionals such as nurses and social workers in our final
sample of studies. Research on these healthcare providers could shed
further light on facilitators to FP decision‐making.
4.1 | Strengths and limitations
The review was strengthened by the focus on qualitative data and
its analytic approach to provide in‐depth understanding of factors
supporting or limiting FP discussion and decision‐making, as well as
its comparison of patient and provider perspectives. The review was
limited by the search criteria and focus on women only. However, we
focused on this group because of the complex and unstandardised ap‐
proaches to FP available to women compared to men. Unlike previous
review articles (Crawshaw, 2013; Quinn et al., 2008), we included all
studie s of women of childbear ing age to gain a diversit y of perspect ives
and a more thorough understanding of FP issues in the context of can‐
cer treatment. Although we performed a systematic literature search,
qualitative articles are not well‐indexed so some eligible studies may
have been missed. We included only studies published in English and
there may be pertinent research findings published in other languages.
5 | CONCLUSION
The review findings highlight overlap in perceived barriers between
healthcare providers and patients in FP discussion and decision‐
making. Findings suggest that even as FP methods advance, deficits
in information, knowledge sharing and skills, structural, material
and social barriers and psychosocial and clinical concerns all play
into decisions about whether and how to discuss FP and subse‐
quent FP decisions. Findings suggest that interventions aimed at
these areas of concern in addition to ongoing developments in FP
technology are needed to improve patient and provider discussions
and decision‐making. Multi‐level policy and practice approaches to
improve training, access to FP ser vices and knowledge translation
plans including strategies for information sharing are needed to
support FP discussions as standard practice in oncology.
ACKNOWLEDGEMENTS
We thank the Information Specialists, Teruko Kishibe and Christine
Neilson, at the Scotia Bank Health Sciences Librar y, Li Ka Shing
Knowledge Institute, St. Michael’s Hospital for performing the
search and Lebei Pi for assisting in the quality assessment of in‐
cluded articles.
CONFLICT OF INTEREST
There are no conflict of interest disclosures for this manuscript.
ORCID
Arden L. Corter http://orcid.org/0000‐0002‐9746‐9029
REFERENCES
Anderson, R. A., & Wallace, W. H. B. (2011). Fer tility preser vation in girls
and young women. Clinical Endocrinology, 75(4), 409–419. https://doi.
org /10.1111/j.1365 ‐2265.2 011. 0410 0.x
Armuand, G. M., Wettergren, L., Rodriguez‐Wallberg, K. A., & Lampic, C.
(2014). Desire for children, difficulties achieving a pregnancy, and infer‐
tilit y distress 3 to 7 ye ars after c ancer diagnos is. Supportive Care in Cancer,
22(10), 2805–2812. ht tps://doi.org/10.1007/s00520 ‐014 ‐2279‐z
Armuand, G. M., Wettergren, L., Rodriguez‐Wallberg, K. A., & Lampic, C.
(2015). Women more vulnerable than men when facing risk for treat‐
ment‐induced infertility: A qualitative study of young adults newly
diagnosed with cancer. Acta Oncologica, 54(2), 243–252. https://doi.
org/10.3109/0284186x.2014.948573
AYA Cancer Fertility Preservation Guidance Working Group. Fertility
preser vation for AYAs diagnosed with cancer: Guidance for health pro-
fessionals. Retrieved from http://wiki.cancer.org.au/australiawiki/
index.php?oldxml:id=110662
Cart y, C. P., Walsh, H. P., Gillett, J. G., Phillips, T., Edwards, J. M., deLacy,
M., & Boyd, R . N. (2014). The effect of femoral derotation osteotomy
on trans verse plane hip and pelvic kinematics in children with ce‐
rebral palsy: A systematic review and meta‐analysis. Gait & Posture,
40(3), 333–340. https://doi.org/10.1016/j.gaitpost.2014.05.066
CASP (2013). Qualitative critical appraisal tool. Retrieved from
http://media.wix.com/ugd/dded87_951541699e9edc71ce66c‐
9b ac47 3 4c69.p d f
Clayman, M. L., Harper, M. M., Quinn, G . P., Reinecke, J., & Shah, S.
(2013). Oncofertility resources at NCI‐designated comprehensive
cancer centers. Journal of the National Comprehensive Cancer Network,
11(12), 1504–1509. https://doi.org/10.6004/jnccn.2013.0177
Coccia, P. F., Altman, J., Bhatia, S., Borinstein, S . C., Flynn, J., George, S.,
… Shead, D. A. (2012). Adolescent and young adult oncology. Clinical
practice guidelines in oncology. Journal of the National Comprehensive
Cancer Network, 10(9), 1112–1150 . ht tp s://doi.org/10.60 04/
jnccn.2012.0117
Corney, R. H ., & Swinglehurst, A. J. (2014). Young childless women with
breast c ancer in the UK: A qualitative study of t heir fer tilit y‐related
experiences, options, and the information given by health profession‐
als. Psychooncology, 23(1), 20–26. https://doi.org/10.1002/pon.3365
Crawshaw, M. (2013). Psychosocial oncofertility issues faced by adoles‐
cents and young adults over their lifetime: A review of the research.
Human Fertility, 16(1), 59–63 . ht tp s://doi .or g/10 .310 9/14647 273. 20
12.733480
Crawshaw, M. A., Glaser, A. W., Hale, J. P., & Sloper, P. (2009).
Male and female experiences of having fertility matters raised

10 of 11
|
DALY et AL.
alongside a cancer diagnosis during the teenage and young adult
years. European Journal of Cancer Care, 18(4), 381–390. https://doi.
org /10.1111/j.1365 ‐235 4.20 08 .01003.x
Deshpande, N. A ., Braun, I. M., & Meyer, F. L. (2015). Impact of fertil‐
ity preservation counseling and treatment on psychological out‐
comes among women with cancer: A systematic review. Cancer, 121,
3938–3947.
Duff y, C., & Allen, S. (20 09). Medical and psychosocial aspec ts of fertilit y
after cancer. Cancer Journal, 15(1), 27–33 . ht tp s://doi.or g/10 .1097/
PPO.0b013e3181976602
Ehrbar, V., Urech, C ., Alder, J., Harringer, K., Zanetti Dallenbach, R.,
Rochlit z, C., & Tschudin, S. (2016). De cision‐making about fertility
preservation‐qualitative data on young cancer patients' attitudes
and needs. Archives of Women's Mental Health, 19, 695–699. https://
doi.org /10.10 07/s00737‐016‐ 0604‐x
Ethics Committe e of the American Society for Reproductive Medicine
(2005). Fertility preservation and reproduction in cancer patients.
Fertility and Sterility, 83(6), 1622–1628.
Garvelink, M. M., ter Kuile, M. M., Bakker, R. M., G eense, W. J., Jenninga,
E., Louwe, L. A., … Stiggelbout, A . M. (2013). Women's experiences
with information provision and deciding about fertility preservation
in the Netherlands: 'satis faction in general, but unmet needs'. Health
Expectations, 18, 956–968. https://doi.org/10.1111/hex.12068
Goncalves, V., Sehovic, I., & Quinn, G. (2014). Childbearing at titudes
and decisions of young breast cancer sur vivor s: A systematic re‐
view. Human Reproduction Update, 20(2), 279–292. https://doi.
org/10.1093/humupd/dmt039.
Goossens, J., Delbaere, I ., Van Lancker, A., Beeckman, D., Verhaeghe, S.,
& Van Hecke, A . (2014). Cancer patient s’ and professional caregivers’
needs, preferences and factors associated with receiving and pro‐
viding fertility‐related information: A mixed‐methods systematic re‐
view. International Journal of Nursing Studies, 51(2), 300–319. https://
doi.org/10.1016/j.ijnurstu.2013.06.015
Gorman, J. R., Bailey, S., Pierce, J. P., & Su, H. I. (2012). How do you feel
about fertilit y and parenthood? The voices of young female cancer
survivors. Journal of Cancer Survivorship, 6(2 ), 2 0 0–2 0 9. h t t ps ://do i.
org /10.1007/s11764‐011‐0211‐9
Gorman, J. R., Usita, P. M., Madlensky, L., & Pierce, J. P. (2011). Young
breast cancer survivors: Their perspectives on treatment decisions
and fertility concerns. Cancer Nursing, 34(1), 32–40. ht tps://doi.
org /10.1097/NCC.0b013e3181e4528 d
Hershb erger, P. E., Finne gan, L., Alt feld, S., Lake, S ., & Hirshfeld‐ Cytro n, J.
(2013). Toward theo retical unde rstandin g of the fertili ty preser vation
decision‐making process: Examining information processing among
young women with cancer. Research and Theor y for Nursing Practice,
27(4), 257–275. https://doi.org/10.1891/1541‐6577.27.4.257
Hershb erger, P. E ., Sipsma, H., Fin negan, L., & Hir shfeld‐Cytron , J. (2016).
Reasons why young women accept or decline fertility preservation
after cancer diagnosis. Journal of Obstetric, Gynecologic, and Neonatal
Nursing, 45(1), 123–134. https://doi.org/10.1016/j.jogn.2015.10.003
Hill, K. A., Nadler, T., Mandel, R ., Burlein‐Hall, S., Libr ach, C., Glass, K.,
& Warner, E. (2012). E xperience of young women diagnosed with
breast cancer who undergo fertility preservation consultation.
Clinical Breast Cancer, 12(2), 127–132. https://doi.org/10.1016/j.
clbc.2012.01.002
Howard‐Anderson, J., Ganz, P. A., Bower, J. E., & Stanton, A. L. (2012).
Qualit y of life, fertilit y concerns, and behavioral health outcomes in
younger breast cancer survivors: A systematic review. Journal of the
National Cancer Institute, 104(5), 386–405. https://doi.org/10.1093/
jnci/djr541
Kastner, M., Tricco, A. C., Soobiah, C., Lillie, E., Perrier, L., Horsley, T.,
… Straus, S. E. (2012). What is the most appropriate knowledge
synthesis method to conduct a review? Protocol for a scoping re‐
view. BMC Medical Research Methodology, 12, 114. https://doi.
org /10.118 6/1471‐2288‐12‐114
Keim‐Malpass, J., Baernholdt, M., Erickson, J. M., Ropka, M. E., Schroen,
A. T., & Steeves, R. H. (2013). Blogging through cancer : Young wom‐
en's persistent problems shared online. Cancer Nursing, 36(2), 163–
172. https://doi.org/10.1097/NCC.0b013e31824eb879
King, L ., Quinn, G. P., Vadaparampil, S. T., Gwede, C. K., Miree, C . A.,
Wilson, C., … Perrin, K. (2008a). Oncology nurses' perceptions of
barriers to discussion of fer tility preservation with patients with can‐
cer. Clinical Journal of Oncology Nursing, 12(3), 467–476. https://doi.
org /10.118 8/0 8.c jon.4 67‐476
King, L ., Quinn, G. P., Vadaparampil, S. T., Miree, C. A ., Wilson, C.,
Clayton, H., & Zebr ack, B. (2008 b). Oncology social workers' p er‐
ceptions of barriers to discussing fertility preservation with cancer
patients. Social Work in Health Care, 47 (4), 479–501. https://doi.
org/10.1080/00981380802255215
Kirkman, M., Stern, C., Neil, S., W inship, I., Mann, G . B., Shanahan, K .,
… Fisher, W. (2013). Fertility management after breast cancer di‐
agnosis: A qualitative investigation of women's experiences of and
recommendations for professional care. Health Care for Women
International, 34(1), 50–67. https://doi.org/10.1080/07399332.201
2.735729
Kirkman, M., Winship, I., Stern, C., Neil, S., Mann, G . B., & Fisher, J. R.
W. (2014). Women's reflec tions on fertility and motherhood after
breast c ancer and its treatment. European Journal of Cancer Care, 23,
502–513. ht tps://doi.or g/10 .1111/ec c.1 2163
Komatsu, H., Yagasaki, K., Shoda, R., Chung, Y., Iwata, T., Sugiyama, J., &
Fujii, T. (2014). Repair of t he threatened f eminine identi ty: Exper ience
of women with cervical cancer undergoing fertility preservation
sur ge ry. Cancer Nursing, 37(1), 75–82. https://doi.org/10.1097/
NCC.0b013e3182888c13
Lee, R . J., Wakefield, A ., Foy, S., Howell, S. J., War dley, A. M., & Arms trong,
A. C. (2011). Facilitating reproductive choices: The impact of health
services on the experiences of young women with breast c an‐
cer. Psychooncology, 20(10), 1044–1052. ht tps://doi.org/10 .1002/
pon.1826
Légaré, F., O’Connor, A. M., Graham, I. D., Saucier, D., Côté, L ., Blais, J.,
… Paré, L. (2006). Primar y health care professionals’ views on bar‐
riers and facilitators to the implementation of the Ottawa Decision
Suppor t Framework in practice. Patient Education and Counseling,
63(3), 380–390. https://doi.org/10.1016/j.pec.2006.04.011
Levine, J. M., Kelvin , J. F., Quinn, G. P., & Gracia, C. R . (2015). Infertility
in reproductive‐age female cancer survivors. Cancer, 121(10), 1532–
1539. https://doi.org/10.1002/cncr.29181
Loren, A . W., Mangu, P. B., Beck, L. N ., Brennan, L., Magdalinski, A. J.,
Partridge, A . H., … Oktay, K. (2013). Fer tilit y preservation for pa‐
tients with cancer: American Society of Clinical Oncology clinical
practice guideline update. Journal of Clinical Oncology, 31(19), 25 00 –
2510. https://doi.org/10.1200/jco.2013.49.2678
Niemasik, E. E., Letourneau, J., Dohan, D., Kat z, A., Melisko, M., Rugo,
H., & Rosen, M. (2012). Patient perceptions of reproductive health
counseling at the time of cancer diagnosis: A qualit ative study of fe‐
male California c ancer survivors. Journal of Cancer Survivorship, 6(3),
324–332. https://doi.org/10.1007/s11764‐012‐0227‐9
O’Flynn, N. (2014). Assessment and treatment for people with fertility
problems: NICE guideline. British Journal of General Practice, 64(618 ),
50–51. https://doi.org/10.3399/bjgp14X676609
Panagiotopoulou, N., Ghuman, N., Sandher, R., Herbert, M., & Stewar t, J.
A. (2018). Barriers and facilitator s towards fertility preservation care
for cancer patient s: A meta‐synthesis. European Journal of Cancer
Care, 27(1), e12428. https://doi.org/10.1111/ecc.12428.
Partridge, A . H., Gelber, S., Peppercorn, J., Sampson, E., Knudsen, K.,
Laufer, M., … Winer, E. P. (2004). Web‐based survey of fer tilit y is‐
sues in young women with breast cancer. Journal of Clinical Oncology,
22(20), 4174–4183. https://doi.org/10.1200/JCO.2004.01.159
Peate, M., Meiser, B., Frie dlander, M., Zorbas, H., Rovelli, S., Sansom‐
Daly, U., … Hickey, M. (2011). It's now or never: Fertility‐related

|
11 of 11
DALY et AL.
knowledge, decision‐making preferences, and treatment intentions
in young women with breast cancer–an Australian fertility decision
aid collab orative group study. Journal of Clinical Oncology, 29(13),
1670–1677. https://doi.org/10.1200/JCO.2010.31.2462
Peate, M. , Meiser, B., Hickey, M., & Friedl ander, M. (2009). The fertility‐re‐
lated concerns, needs and preference s of younger women with breast
cancer: A systematic review. Breast Cancer Research and Treatment,
116(2), 215–223. https://doi.org /10.1007/s10549‐0 09‐04 01‐6
Peddie, V. L., Porter, M. A ., Barbour, R., Culligan, D., MacDonald, G.,
King, D., … Bhattacharya, S. (2012). Factors af fecting decision mak‐
ing about fertility preservation after cancer diagnosis: A qualitative
study. Bjogan Internation al Journal of Obstetrics & Gynaecology, 119(9),
1049–1057. htt ps://doi.org /10.1111/j .1471‐0528 .2012.03368. x
Penrose, R., Beatty, L., Mattiske, J., & Koczwara, B. (2012). Fertility and can‐
cer–a qualitative study of Australian cancer survivors. Supportive Care in
Cancer, 20(6), 1259–1265. https://doi.org/10.1007/s00520‐011‐1212‐y
Quinn, G . P., & Vadaparampil, S. T. (2009). Fertility preservation and
adolescent/young adult cancer patients: Physician communication
challenges. Journal of Adolescent Health, 44(4), 394–400. ht tps://doi.
org/10.1016/j.jadohealth.2008.08.014
Quinn, G . P., Vadaparampil, S. T., Bell‐Ellison, B. A., Gwede, C. K ., &
Albrecht, T. L. (2008). Patient–physician communication barri‐
ers regarding fertility preservation among newly diagnosed can‐
cer patients. Social Science & Medicine, 66(3), 784–789. https://doi.
org/10.1016/j.socscimed.2007.09.013
Quinn, G . P., Vadaparampil, S. T., Gwede, C . K., Miree, C., King, L . M.,
Clayton, H. B., … Munster, P. (2007). Discussion of fertility preser‐
vation with newly diagnosed patients: Oncologists' views. Journal
of Cancer Survivorship, 1(2), 146–155. https://doi.org/10.1007/
s11764‐007‐0019‐9
Quinn, G . P., Vadaparampil, S. T., King, L., Miree, C. A ., Wilson, C., Raj,
O., … Albrecht, T. L. (20 09). Impact of physicians' personal discom‐
fort and patient prognosis on discussion of fertility preser vation with
young cancer patients. Patient Education & Counseling, 77(3), 338–
343. https://doi.org/10.1016/j.pec.2009.09.007
Quinn, G . P., Vadaparampil, S. T., Lee, J. H., Jacobsen, P. B., Bepler, G.,
Lancaster, J., … Albrecht, T. L. (2009). Physician referral for fertility
preser vation in oncology patients: A national study of practice be‐
haviors. Journal of Clinical Oncology, 27(35), 5952–5957. https://doi.
org/10.1200/JCO.20 09.23.0250
Rashedi, A. S., de Roo, S. F., Ataman, L. M., Edmonds, M. E., Silva, A.
A., Sc arella, A., … Ramalho de C arvalho, B. (2017). Survey of fertil‐
ity preservation options available to patients with cancer around the
globe. Journal of Global Oncology, 2016, 0 08144.
Royal Coll ege of Physicians, Roya l College of Radiol ogists, & Royal Co llege
of Obstetricians and Gynaecologist s (2007). The effects of cancer
treatment on reproductive functions: Guidance on management. London:
RCP. Retrieved from https://www.rcr.ac.uk/system/files/publication/
field_publication_files/Cancer_fertility_effects_Jan08.pdf
Russell, A. M., Galvin, K . M., Harper, M. M., & Clayman, M. L. (2016). A
comparison of heterosexual and LGBTQ cancer survivors' outlooks
on relationships, family building, possible infertility, and patient‐doc‐
tor fertility risk communication. Journal of Cancer Survivorship, 10 (5),
935–942. https://doi.org/10.1007/s11764‐016‐0524‐9
Sandelowski, M., Barroso, J., & Voils, C. I. (2007). Using qualitative
metasummary to synthesize qualitative and quantitative descrip‐
tive findings. Research in Nursing & Health, 30(1), 99–111. https ://doi.
org /10.10 02 /nur. 20176
Snyder, K. A ., & Tate, A. L. (2013). What to do now? How women with
breast cancer make fertility preservation decisions. Journal of Family
Planning & Reproductive Health Care, 39(3), 172–178. https://doi.
org/10.1136/jfprhc‐2011‐100286
Snyder, K. A ., Thazin, M. K., Pearse, W. B., & Moinuddin, M. (2010). T he
fertility‐related treatment choices of cancer patients: Cancer‐re‐
lated infertilit y and family dynamics. In T. K. R. Woodruff, S. Campo‐
Engelstein, & L. Zoloth (Ed.), Oncofertility: Ethical, legal, social, and
medical perspectives (pp. 413–428). Dordrecht, the Netherlands:
Springer Netherlands.
Sobot a, A., & Ozakin ci, G. (2014). Fertil ity and parent hood issues in you ng fe‐
male cancer patients—a systematic review. Journal of C ancer Survivo rship,
8(4), 707–721. https://doi.org/10.1007/s11764‐014‐0388‐9
Thewes, B., Meiser, B., Rickard, J., & Friedlander, M. (20 03). The fertility‐
and menopause‐related information needs of younger women with a
diagnosis of breast cancer: A qualitative study. Psychooncology, 12(5),
500–511. https://doi.org/10.1002/pon.685
Thewes, B., Meiser, B., Taylor, A., Phillips, K. A ., Pendlebury, S., Capp,
A., … Friedlander, M. L. (2005). Fertility‐ and menopause‐related in‐
formation needs of younger women with a diagnosis of early breast
cancer. Journal of Clinical Oncology, 23 (22), 5155–5165. https://doi.
org/10.1200/jco.2005.07.773
Tschudin, S., & Bitzer, J. (20 09). Psychological aspects of fer tility preser‐
vation in men and women affec ted by cancer and other life‐threat‐
ening diseases. Human Reproduction Update, 15(5), 587–597. https://
doi.org/10.1093/humupd/dmp015
Ussher, J. M., Cummings, J., Dryden, A., & Perz, J. (2016). Talking about
fertility in the context of cancer : Health care professional perspec‐
tives. European Journal of Cancer Care, 25(1), 99–111. htt ps: //doi.
org /10.1111/ecc .12379.
Vadaparampil, S., Quinn, G ., King, L., Wilson, C., & Nieder, M. (2008).
Barriers to fertility preser vation among pediatric oncologists. Patient
Education & Counseling, 72(3), 402–410. ht tps ://doi.org/10.1016/j.
pec.2008.05.013
von Elm, E., Altman, D. G., Egger, M., Pocock, S. J., Got zsche, P., &
Vandenbroucke, J. P. (2007). The Strenthening the Repor ting
of Obser vational Studies in Epidemiology (STROBE) statement:
Guidleines for reporting observational studies. Bulletin of the World
Health Organization, 85, 867–872.
Wallace, W. H. B. (2011). Oncofer tility and preservation of reproductive
capacity in children and young adults. Cancer, 117(S10), 2301–2310.
https://doi.org/10.1002/cncr.26045
Wilkes, S., Coulson, S., Crosland, A ., Rubin, G., & Stewart, J. A. (2010).
Experience of fertility preservation among younger people diag‐
nosed with cancer. Human Fertility, 13 (3), 151–158. https://doi.org /
10.310 9/14647273.2 010. 503 359
Wo, J. Y., & Viswanathan, A. N. (2009). The impact of radiotherapy on
fertility, pregnancy, and neonatal outcomes of female cancer pa‐
tients. International Journal of Radiation Oncology Biology Physics,
73(5), 1304–1312. https://doi.org/10.1016/j.ijrobp.2008.12.016
Yee, S., Abro l, K., McDona ld, M., Tonelli, M., & L iu, K. E. (2012). A ddressing
oncofertility needs: Views of female cancer patients in fertility pres‐
ervation. Journal of Psychosocial Oncology, 30(3), 331–346. https://
doi.org/10.1080/07347332. 2012.664257
Yee, S., Bucket t, W., Campbell, S ., Yanofsky, R., & Barr, R. D. (2012). A
national study of the provision of oncofer tility services to female pa‐
tients in Canada. Journal of Obstetrics & Gynaecology Canada, 34(9),
849–8 58. https ://doi.org /10.1016/S1701‐2163(16) 353 84 ‐1
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How to cite this article: Daly C , Micic S, Facey M, et al. A
review of factors affecting patient fertilit y preservation
discussions & decision‐making from the perspectives of
patients and providers. Eur J Cancer Care. 2019;28:e12945.
https ://doi.or g/10.1111/e cc.12945