Fertility and assisted reproduction
Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study
V Peddie, Division of Applied Health Sciences, Obstetrics and Gynaecology, School of Medicine and Dentistry, Division of Applied Health Sciences, University of Aberdeen, Aberdeen Maternity Hospital, Cornhill Road, Aberdeen AB25 2ZD, UK. Email email@example.com
Please cite this paper as: Peddie V, Porter M, Barbour R, Culligan D, MacDonald G, King D, Horn J, Bhattacharya S. Factors affecting decision making about fertility preservation after cancer diagnosis: a qualitative study. BJOG 2012;119:1049–1057.
Objective To increase our understanding of factors underlying the decision to store gametes after the diagnosis of cancer.
Design Qualitative interview study.
Setting Andrology, Haematology, and Oncology Departments of a Scottish teaching hospital, and patients’ own homes.
Population Sixteen men and 18 women aged 17–49 years recently diagnosed with cancer; 15 health professionals concerned in cancer care.
Methods Audio-recorded semi-structured interviews were transcribed verbatim and analysed thematically. Topics included perceptions of diagnosis; prognosis; future reproductive choices; priorities; quality of information received; communication and decisions made about future reproductive choices; and the role of partners, family, friends and healthcare professionals. Professional interviews examined their role in decision making and that of protocols and guidelines, together with information emerging from patient interview analysis.
Main outcome measure Themes identified following analysis of interview transcripts.
Results The primary barriers to pursuing fertility preservation were the way in which information was provided and the ‘urgent need for treatment’ conveyed by staff. Survival was always viewed as paramount, with future fertility secondary. Sperm banking was viewed as ‘part and parcel’ of oncology care, and the majority of men quickly stored sperm as ‘insurance’ against future infertility. Few women were afforded the opportunity to discuss their options, reflecting clinicians’ reservations about the experimental nature of egg and ovarian tissue cryopreservation, and the need for partner involvement in embryo storage.
Conclusions Significant gaps in the information provided to young women diagnosed with cancer suggest the need for an early appointment with a fertility expert.
Most young people expect to have children in the future,1 but infertility can be a ‘devastating side-effect’ of cancer treatment2 leading to reduced quality of life.3–5 A rising incidence of cancer in people of reproductive age, combined with improvements in long-term survival, means that many of those affected may benefit from safeguarding their reproductive future. It has been widely argued that at the time of diagnosis, people with cancer should be provided with accurate information about the potential risk of impaired fertility after treatment for cancer irrespective of whether local facilities for gamete cryopreservation exist.6–11 However, in reality, the immediate emphasis is often on treatment, with little time available to discuss future fertility or options for fertility preservation.9 There may be overriding medical reasons for proceeding with urgent cancer treatment, but some people may be unaware of the options available to them or too traumatised to contemplate preserving their fertility. This may explain why newer and safer fertility preservation techniques are underused at present.12
For younger men, sperm freezing is considered a simple and highly successful fertility preservation strategy,12 and is offered regardless of any expectation of recovery of spermatogenesis. For women who survive cancer, some may regain ovarian activity after completing treatment, and would expect to retain reproductive function.9,13 The only proven method for women is embryo cryopreservation14 but this is problematic in the absence of a male partner. Newer options like ovarian tissue or oocyte cryopreservation are technically invasive techniques, and considered to be ‘experimental’.12,15
The aim of this study was to explore perceptions and use of fertility preservation techniques in men and women of reproductive age diagnosed with cancer in a tertiary referral centre without the full range of facilities for cryopreservation. As there are few data on the views of future fertility in younger people with cancer, their perceptions of the information provided—in the context of fertility preservation techniques—and decisions made in consequence are presented. Qualitative methods were used to explore participants’ knowledge and views of the options available to them, as well as their needs for information and decision making. Findings were examined in the context of care providers’ knowledge and perceptions of fertility preservation strategies, facilities available and their personal role in information provision and decision making. Hence, the results and conclusions may assist service providers to prioritise their practice.
Recently diagnosed men and women aged 16–44 years receiving treatment in Aberdeen for haematology-related (Hodgkin’s and non-Hodgkin’s lymphomas and leukaemia) and other cancers between August 2008 and June 2010 were invited consecutively to participate. Sixteen of 18 selected men agreed to be interviewed; their experiences were very similar and data saturation (no new information emerging during analysis) was quickly reached. Women’s experiences were more varied and consequently 18 were interviewed (three more declined participation) before saturation was approached. The partner of a male participant was also interviewed at her request; two other women attended the interviews of their male partners and two mothers of younger participants were also present, frequently offering their perceptions of the experience. Steps were taken to ensure that a variety of diagnoses, ages and marital statuses were included. At the time of interview, only nine participants had a child or children. Although we were unable to select purposively on the basis of occupation, we achieved a broad spectrum of respondents (Table 1).
Table 1. Details of patients interviewed
|20||Single||0||Manual Labourer||Non-Hodgkin lymphoma (NHL)|
|21||Partner||0||Professional, Oil and Gas||Leukaemia|
|32||Partner||Pregnant at interview**||Professional, Oil and Gas||Brain tumour|
|38||Single||0||Healthcare Professional||Breast cancer|
|45||Married||1 + 2***||Admin||Breast cancer|
Participants were interviewed by VP soon after their first oncology consultation. Some interviews were carried out in side rooms of outpatient departments while participants were attending for chemotherapy and interruptions were experienced; the remainder were carried out in participants’ own homes. Topics covered included: their perceptions and understanding of the initial diagnosis, the prognosis and their future reproductive choices; their own and others’ perceived priorities regarding future fertility; perceived quality and source of information received, communication and support; decisions made regarding both treatment and future reproductive choices; and the role of partners, family members, friends and healthcare professionals. Interviews, which lasted between 30 and 70 minutes, with an average of 40 minutes, were audio-recorded and transcribed verbatim.
Table 2 shows details of the 15 members of staff who were interviewed by MP, in their offices (n = 13) or those of the researchers (n = 2). This was not intended to be a representative sample, but sufficient to ensure anonymity in small departments and to explore fully professionals’ perceptions of the care and information they provided about future reproductive potential.
Table 2. Professionals interviewed
|Obstetrics gynaecology oncology||Female||Consultant|
|Neurology oncology||Female||Specialist nurse|
|Gen surgery oncology||Female||Consultant|
|Breast care||Female||Specialist nurse|
|Clinical oncology||Female||Ward sister|
|Oncology outpatients||Female||Staff nurse|
The interview schedule was amended during the study as new factors and insights emerged and were incorporated into future interviews. It was influenced by protocols and national and local guidelines for the management of younger people with cancer and also themes emerging from the patient interview analysis. Staff were asked their opinions of the ‘patient care pathway’, their own feelings about the information given to younger people with cancer, their knowledge and views of the treatments available with respect to fertility preservation and their perceptions of patients’ priorities. Other important topics, such as perceived differences in the urgency of treatment, emerged during the course of the professional interviews. They were also audio-recorded and transcribed verbatim immediately afterwards. The data were analysed thematically using a variation of grounded theory to discover the important categories and develop them into themes relating to perceptions of reproductive choices among younger men and women with cancer. All three qualitative researchers, MP, VP and RB, independently scrutinised the transcripts and compared and discussed coding categories and emerging themes, which are summarised below. Quotes recently diagnosed from people with cancer are denoted by gender and age and those recently diagnosed from professionals by rank and discipline.
Almost all of the people with cancer had been provided with written information recently diagnosed about cancer treatment, which included a small section on fertility preservation, though most patients and staff were unclear of the details therein. All but one of the men had also had a discussion with staff about fertility preservation (sperm banking), and a local protocol was in place for immediate referral. Although it may have been mentioned, few of the women could remember fertility preservation being discussed and no protocol was available for staff to follow. Staff mentioned the need to raise the issue of future fertility soon after the initial diagnosis of cancer and before treatment commenced. However, most said that they did not discuss it in detail because patients were given a lot of information at their first visit—when they were at their most vulnerable—and could experience ‘information overload’ and not absorb details they were given. Some staff also reported holding back from discussing long-term implications of cancer and its effect on future fertility because it might not be necessary if the first tranche of treatment was successful.
“…In terms of issues relating to fertility we recognise that it is extremely important so we do [mention it]. I tend to bring it up relatively early on with them…but I have some concerns about the volume of written information that is going about.”
“I don’t go into great [detail] I don’t usually discuss preservation of fertility or any of those kind of things, unless I am asked about it.”
“And then when they [staff] asked, “would you like to do a sperm sample?”, I thought, well, yes, because even if we weren’t in the mindset of having kids right now, in the future we will be; so we can’t not take that opportunity.”
(Male, 32 years)
“…because I’m young, things like fertility have never really crossed my mind. But it [did] when the reflexology lady said to me, “How do you feel about things like your fertility being affected?.”
(Female, 21 years)
Staff acknowledged that some people ‘slipped through the net’ and received no information; hence one woman was alerted to fertility issues by a reflexologist. Many found out that future fertility might be affected from the written information supplied to them or from websites they or family members had visited. Staff also advised patients not to consult the internet, which has the potential for providing misleading or inaccurate information, and this was largely respected.
Men and women were given different information, reflecting variations in the fertility preservation options available, perceived success rates and subsequent delay in accessing chemotherapy. Men were actively encouraged to consider storage of sperm, even if they had children already, possibly because the procedure is relatively straightforward. Most men expected their fertility to return in the future but felt that they had ‘nothing to lose’ by storing sperm. The few women who could remember fertility options being mentioned were left feeling negative about the prospect, largely because of the way the information was presented. Whether or not they expected their fertility to return, they felt that they had much to lose, and possibly little to gain, by delaying potentially, life-saving treatment.
“Well I think that I find it very easy to talk to the men purely because there is something you can offer them and it is quite straightforward. …with the women it is not quite so easy.”
“Well I was glad I was given the opportunity to have some sperm frozen because if there was any risk at all to my fertility then I did not see any reason not to take advantage of that.”
(Male, 25 years)
“I am not sure whether it was the first time or when we went back, but he did say that he [consultant] didn’t really think it was an option.”
(Female, 19 years)
“If I have only got three months to live, the last thing you are thinking about is freezing eggs. And then, the way they put it was, “Well you can freeze some but it is a big, long process and chances are that it won’t work anyway, so we just need to get on with the treatment.”
(Female, 35 years)
Although staff withheld detailed information from women in the expectation that initial chemotherapy regimens would not affect future fertility, they openly discussed their inability to ‘predict’ who might relapse, requiring second-line management, which would subsequently affect fertility. Other considerations included age and marital status, variable diagnoses and prognoses, inpatient or outpatient status and existing children. For example, the prognosis for men with testicular cancer was perceived as ‘more favourable’ than that of people with leukaemia. Women in their late 30s or early 40s who already had children, or were without a long-term partner often gained the impression from health professionals that they had little to gain, were unsuitable for cryopreservation of gametes and hence ruled out this possibility. Age at possible parenthood was also perceived as problematic by both patients and staff, especially for women committed to several years of anti-estrogen regimens after treatment for breast cancer.
“And sometimes because women we see are maybe in their late 30s or 40s, they’ve either already had children or they don’t have a partner, and they realise that they can’t just store eggs on their own.”
(Consultant, Obstetrics & Gynaecology)
“But the thing [sperm freezing] is quite quick…we’d had a short time in which to decide. So we thought, “Let’s just be safe about this.” So we have the option if we decide [on parenthood] in five years time.”
(Male, 37 years)
“But I did mention about freezing my eggs and things like that…and they said it was too late to consider that.”
(Female, 34 years)
“They [Medical staff] said, “Well have you got a partner? Are you in a relationship?” and they sort of almost look down their nose at you when you say, “well no, not at the moment…” It’s like you shouldn’t even be asking about it until you are in a relationship.”
(Female, 35 years)
Urgency of treatment versus ‘insurance policy’
The main reason staff did not discuss fertility preservation with the majority of women, was their belief that treatment was needed too urgently to justify the delay that would necessarily be involved in cryopreserving embryos, oocytes or ovarian tissue. Although emphasising the notion of urgency, particularly in cases of unusual or aggressive types of cancer, staff were often uncertain about how long it would take to complete an in vitro fertilisation (IVF) cycle or to store embryos, or the availability of local facilities. Women reported being told that the need for treatment was too urgent to justify the delay that fertility preservation would necessitate and none pursued it whereas men were urged to store a ‘pre-chemo sample’ and most did so. Only one described a ‘desperate’ struggle to complete the lengthy, yet necessary, paperwork to produce and store a sample. Staff stated that they were not influenced by waiting times/lists in stressing urgency, but were concerned that treatment be initiated as soon as possible.
“…if a young woman is very keen on ovarian strip cryopreservation, we could get that done in Edinburgh. But they would have to appreciate that it will take a bit of time to set that up; it will mean a delay in treatment…and at its crudest, [with] any delay in cancer, there is a risk that it may have spread further.”
(Consultant, Paediatric Oncology)
“Clearly the number one priority is the diagnosis and the impact that has on them and I think without doubt the number one concern is how the treatment is going to affect them in the immediate term and what their chances of survival are.”
“I thought as soon as this happened that time is totally of an essence, but it was clear to me straight away I need to protect my fertility…I needed to use the sperm bank.”
(Male, 43 years)
“They also said it would take a month for the IVF treatment to work, before they could take eggs and they didn’t recommend that she waited that long. They wanted her in the next day to start her treatment.”
(Mother of Female, 24 years)
“The doctor said, “it’s possible to get eggs frozen but I wouldn’t recommend it because it would delay your treatment and the risk [of infertility] is comparatively small”. He said the risk would be a lot higher; it would almost certainly have an effect if I had to get the different chemotherapy later on. But he said, “Let’s just leave that discussion.”
(Female, 23 years)
Patients accepted and reiterated clinicians’ perceptions of the urgent need for treatment, even interpreting speedy referrals/tests as evidence of the urgency of their case.
Cautionary approach to ‘experimental techniques’
Professionals forcefully conveyed to women and the interviewer their concerns about the risks of delaying life-saving treatment and concerns about the unproven benefits of preserving female gametes—which might never be required—should fertility be restored or a suitable partner not found. Women reported being given dramatic examples of former patients who had sought fertility preservation or attempted pregnancy too soon and had relapsed or died as a consequence, a finding supported by MP’s experience of interviewing staff. Apart from embryo storage, other fertility preservation techniques for women were frequently understood and presented as ‘experimental’ by both oncologists and specialist gynaecologists.
“I had one lady extremely keen to stop her adjuvant hormone therapy after two years rather than the standard five so that she could have a child, and she has, and unfortunately she has relapsed after that; so you have to advise them very carefully.”
“…that might involve potentially storing eggs, and if they were in a relationship potentially storing embryos. Ovarian tissue storage I usually say to them, is an experimental exercise.”
(Consultant, Obstetrics & Gynaecology)
“And at that time, I did query about my fertility, and they [medical staff] did say that because of my state at the moment, they didn’t want to do anything because saving my life was more important.”
(Female, 20 years)
Assuming priority and preference
Staff sometimes assumed that they understood patients’ fears, and consequently their priorities and preferences for starting treatment and this may have influenced the quality of information they provided. Despite being aware of people who had successfully delayed treatment and gone on to have children, they felt that patients would prioritise urgent initiation of treatment, rather than embarking on fertility preservation procedures which were time consuming, involved adverse effects and could jeopardise their chances of complete recovery. One clinician suggested that prolonging people’s lives could produce later health problems for which they were ill prepared, and that preserving fertility would simply add to that burden. Some medical staff suggested that fertility preservation would only become a priority for people once the prognosis was thought to be reasonably good. A proportion believed that other specialties had more opportunities for fertility preservation than their own. Women who reported that no discussion of fertility preservation had taken place may have been unable to remember such a conversation as a result of heightened anxiety but may also have identified with physicians’ therapeutic priorities.
In view of the way postponing cancer treatment—to allow sufficient time for fertility preservation techniques—was presented, it is not surprising that only two women requested referral to a fertility specialist for full discussion. They valued the opportunity, but declined fertility preservation because of the perceived invasiveness and uncertainty of outcome. However, one was surprised to learn how quickly the procedure could be achieved and how there had been ‘a 3-month window’ of opportunity before chemotherapy commenced when she might have pursued the option had she been fully informed.
“The risk–benefit analysis of the treatment versus the disease is so bad for the disease that I actually say “perhaps one of the things that you are going to have to sacrifice to this disease is your fertility”. And I think if we are being honest we…discourage the women from pursuing that, at the expense of delaying the treatment. Rightly or wrongly I suppose.”
“I wouldn’t say fertility is not important, but it is just one of a series of burdens: heart problems, osteoporosis, diabetes, weight gain, [and] the lifestyle changes that can be caused by treatment of cancer.”
“Well for most patients, I think it probably is a bit of a non-issue, because I think they are more concerned about their cancer.”
“If somebody had said to me at the very start, “Well, here’s your options and I’ll give you time to weigh it up” I think it would have been better.”
(Female, 35 years)
“No one can say 100% what the outcome of treatment is going to be. You could go through these other procedures and then discover that actually you didn’t need to have it done. And then you end up delaying the start of your treatment.”
(Female, 38 years)
Staff made it plain during interviews that they would feel justified in actively helping patients to make what they believed to be the ‘right’ decision, despite being unsure of fertility preservation techniques available locally.
Studying patients soon after the diagnosis of cancer has revealed that, in the sample selected, few women were afforded the opportunity to discuss the benefits and limitations of fertility preservation options available to them. Clinical staff felt justified in withholding information from women and guiding their decision making, first because of their belief that fertility would not be affected by first-line chemotherapy; second, because current fertility preservation techniques were not effective or useful and third, because, in most cases, treatment was urgently needed and both staff and patients prioritised survival above fertility preservation. Men, on the other hand routinely stored semen, a procedure they viewed as ‘inclusive’ of treatment and ‘insurance’ against the possibility of future infertility.
This is the first study specifically to explore younger men and women’s experience of communication about their future fertility at the time of cancer diagnosis, and place their perceptions in the context of those provided by clinical staff. As the study took place in a specific setting in Scotland, and represents the views of 34 patients and 15 healthcare professionals involved in cancer or reproductive care, the findings cannot be generalised widely. However, where people have limited access to specialist services—e.g. are served by District General Hospitals—this situation may be relevant. We did not feel it appropriate to interview staff elsewhere in Scotland because this would have made it difficult meaningfully to interpret patients’ accounts and place them in the context of relevant hospital settings. Although staff participants might have been expected to change their practice during the course of the study, as they became more aware of the issues involved, there was no evidence of this effect. The busy nature of the clinics and the extended period required for recruitment—involving a relatively small proportion of patients seen—may also have militated against patients being treated differently.
The ability to retain reproductive potential is important to young people.3,6,16,17 Guidance from the Royal College of Obstetricians and Gynaecologists,10 National Institute for Health and Clinical Excellence,18 British Fertility Society11 and the American Society for Reproductive Medicine8 recommends that young people with cancer and their families should be advised on implications for future fertility by appropriately trained personnel.
Our findings support data from previous studies that suggest continued unmet information needs in the context of fertility preservation.6,19 The Health Service is focused on diagnosis and cure; clinicians routinely mentioned fertility issues but viewed their primary role as initiating life-saving treatment rather than providing information about fertility preservation. Use of leaflets, whose content relevant to fertility preservation was either unknown or viewed as ‘limited’ by both patients and staff, was perceived as no substitute for discussion by patients. Peate et al.,6 reported that limited knowledge increased decisional conflict, which was likely to affect the quality of the decision-making experience. Eskander et al.20 and Royak-Schaler et al.21 also found when considering risks and benefits that professionals made value judgements about patients’ preference for commencing chemotherapy treatment. Like Burns et al.,2 we found that patients rated good health as a priority and were not willing to postpone ‘vital’ treatment to preserve fertility, apparently accepting the clinicians’ perception of urgency. For men, the decision to store gametes could be viewed as a ‘basic consideration’—as opposed to a complex decision—with sperm banking viewed as ‘part and parcel’ of consultation and management of cancer diagnosis.22–24 However, a qualitative study of 20 Canadian people who had survived cancer suggested that accessibility, cost and perceived complexity were among eight factors identified as affecting uptake of sperm banking.5
Our results agree with previous work which highlights gender differences in the context of information provision in cancer care,25–27 suggesting that, for many women, there was no real decision to make, as few received information about gamete cryopreservation.6 The primary reasons for this include a lack of knowledge and confidence in the effectiveness of currently available fertility preservation techniques, anticipation of unimpaired fertility after most first-line chemotherapeutic agents. Clinicians were also less likely to value the experience of having a discussion about fertility options in the absence of a clear decision to proceed down this route.
Although it is true that first-line treatments for Hodgkin’s lymphoma are unlikely to compromise fertility,28 clinicians could not predict those likely to ‘relapse’ and subsequently require treatment that could affect future ovarian function. The few women referred to a fertility specialist valued this opportunity and felt that this provided them with choice3,14,29,30 and control over the decision-making process.31 However, they did not choose to preserve their fertility, suggesting the relatively small proportion of women likely to pursue this option after full discussion. Like Lally32 and Penrose et al.,3 we found that most patients were influenced by the thought processes of medical staff, yet women would have welcomed the opportunity for discussion about fertility preservation. Denying women the choice for discussion, creates the potential for future regret and reduced quality of life.6,33
This reticence on the part of health professionals could be attributed to lack of knowledge about current fertility practice.5,20,34 Few were aware of the significantly abridged time currently required to complete an urgent IVF treatment cycle,15,35,36 logistics, service provision and limited funding; lack of professional knowledge with limited success may mean that young women are inadequately informed and have fewer choices,8,37,38 and are left facing the prospect of future infertility, premature menopause37 or risk of relapse in attempting pregnancy. Women remained uncertain as to their reproductive potential, and whether second-line regimens would be required39 by which time, the window of opportunity for discussion of fertility preservation had been be lost.3,38
Our study has demonstrated significant gaps in the information provided to young women diagnosed with cancer and suggests the need for an early appointment with a fertility expert. Newer shorter protocols for ovarian stimulation using gonadotrophin-releasing hormone antagonists have reduced the delay in accessing cancer treatment in those proceeding with oocyte or embryo cryopreservation. However, given current funding arrangements within the National Health Service and the relatively poor fertility outcomes in women of advancing reproductive age, the resource implications for fertility preservation as well as future assisted reproduction need to be considered. The findings of this study need to be replicated in a larger more representative population before the results can be used to inform a care pathway in the area of onco-fertility.
Disclosure of interest
The authors indicated no potential conflicts of interest.
Contribution to authorship
VP, MP and SB contributed to the conception and design of the study. VP, MP and RB discussed the content of the aide memoires. VP, MP, SB, RB, DC, DK and GMc were involved in determining the eligibility and inclusion criteria of participants of the study. VP applied for ethical approval, and VP and MP applied to the Chief Scientist’s Office for funding. JH was instrumental in patient recruitment. VP conducted all the patient interviews, and MP conducted all but one of the professional interviews. VP and MP conducted the analyses of the data with coding of the data subsequently checked by RB for accuracy and consistency. All authors contributed to the content of the final report, which was sent to the CSO in September 2010.
Details of ethics approval
Approval for the study was obtained from the North of Scotland Research Ethics Service. The North of Scotland Research Ethics Committee Reference Number is 08/S0801/10, dated 21 August 2008.
This study was funded by the Chief Scientist’s Office (CSO). The views expressed in this paper reflect those of the authors and not the CSO. We are grateful to our colleagues and patients in the Aberdeen Fertility Centre, Haematology, Urology and Oncology outpatient departments within NHS Grampian.