Original Article
Talking about fertility in the context of cancer: health care professional perspectives J.M. USSHER, PHD, PROFESSOR, Centre for Health Research, Western Sydney University, Sydney, NSW, J. CUMMINGS, PHD, RESEARCH OFFICER, Centre for Health Research, Western Sydney University, Sydney, NSW, A. DRYDEN, BA (HONS), RESEARCH OFFICER, Centre for Health Research, Western Sydney University, Sydney, NSW, & J. PERZ, PHD, PROFESSOR, Centre for Health Research, Western Sydney University, Sydney, NSW, Australia USSHER J.M., CUMMINGS J., DRYDEN A. & PERZ J. (2016) European Journal of Cancer Care 25, 99–111 Talking about fertility in the context of cancer: health care professional perspectives Health care professionals (HCPs) play a key role in providing information and counselling about the implications of cancer for fertility, however, many patients do not receive such information. The aim of this study was to examine the perspectives and practices of Australian HCPs in relation to discussing fertility with cancer patients. A mixed-methods design, comprising of an online survey of 263 HCPs [41.4% nurses; 25.5% doctors; 31% allied health care professionals (AHP)] and qualitative interviews with 49 HCPs, was utilised. HCPs reported that fertility is an important concern for patients and their partners; however, only 50% of doctors and nurses, and 24% of AHPs reported that they always addressed this issue. The primary barriers to discussing fertility were poor patient prognosis; patient gender or age; time constraints; and absence of appropriate resources and materials. Only a minority of HCPs (29%) had undergone training in discussing fertility with cancer patients. The majority wanted further training or education: including nurses (81.8%), AHPs (80.6%) and doctors (55.4%). HCPs agreed that a number of resources would assist them to raise fertility with their patients, including a list of appropriate referral sources, fact sheets, information booklets, a fertility consultation checklist and on-line resources.
Keywords: fertility, cancer, health care professionals, attitudes, practices, oncofertility.
For many people, cancer presents a ‘double trauma’ (Carter et al. 2010), wherein the difficulty of dealing with a lifethreatening diagnosis is combined with the possible loss of fertility. This trauma is accentuated by the fact that many cancer survivors experience a heightened desire to have children (Zebrack et al. 2004), which signifies a return to normality (Crawshaw & Sloper 2010) and the ability to ‘close the door’ on cancer (Connell et al. 2006, p. 105). Advances in fertility preservation options have
Correspondence address: Jane Ussher, Centre for Health Research, School of Medicine, Western Sydney University, Locked Bag 1797, Penrith South DC, NSW 1797, Australia (e-mail:
[email protected]).
Accepted 3 August 2015 DOI: 10.1111/ecc.12379 European Journal of Cancer Care, 2016, 25, 99–111
© 2015 John Wiley & Sons Ltd
allowed fertility to be addressed at earlier stages in cancer care (Quinn & Vadaparampil 2013; Vadaparampil & Quinn 2013). This, combined with greater survivorship rates, has enabled fertility to become an important quality of life issue for health care professionals (HCPs) to consider, with discussion of fertility concerns described as ‘a crucial aspect of high quality health care’ which helps with patient adjustment (Goncßalves et al. 2015, p. 126). Individuals affected by cancer have reported a need for information about fertility (Tschudin & Bitzer 2009; Dryden et al. 2014), with the importance of fertility discussion ranking second to discussions about mortality for some people (Loscalzo & Clark 2007). Clinical guidelines (Lee et al. 2006; American Society for Reproductive Medicine 2013; Loren et al. 2013; Clinical Oncology Society of Australia 2014) and researchers (Davis 2006; Crawshaw
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et al. 2008) recommend that fertility information be provided at the point of diagnosis. As infertility can be a late effect of cancer (Loscalzo & Clark 2007), information is also needed after treatment has ended. However, not all HCPs are having these discussions with their patients (Lee et al. 2006), with a significant proportion of patients reporting that they received no information about fertility, or cannot remember what they were told (Schover 1999; Tschudin & Bitzer 2009). One explanation is that HCPs do not place the same importance on fertility issues as patients and their families (Goncßalves et al. 2015). Furthermore, only a minority of HCPs have undergone training in discussing fertility (Vadaparampil & Quinn 2013; Linkeviciute et al. 2014), meaning that they may lack the knowledge and resources required to aid these sometimes challenging conversations (Thompson et al. 2013). A number of specific barriers to communication with patients about fertility have been identified by HCPs, including personal, institutional and patient-related factors (Goossens et al. 2014). Personal barriers include lack of knowledge or training about fertility in the context of cancer, combined with absence of guidelines or information on fertility preservation (King et al. 2008; Quinn & Vadaparampil 2009; Thompson et al. 2013; Goossens et al. 2014). Additional barriers include the subjective viewpoint of the HCP, including low priority placed on fertility information provision, discomfort in discussing fertility, ambiguity about whose responsibility it is to raise the issue, believing that patients are not concerned about fertility, and concerns about delays in treatment for fertility preservation (King et al. 2008; Quinn & Vadaparampil 2009; Louwe et al. 2013; Thompson et al. 2013; Goossens et al. 2014). Institutional related barriers include the cost of fertility preservation and absence of insurance coverage in some countries, limited availability of educational materials about fertility preservation, lack of reproductive specialists for referral and time pressure (King et al. 2008; Vadaparampil et al. 2008; Quinn & Vadaparampil 2009; Goossens et al. 2014). Patient-related barriers include age, gender, already having children, poor health status or low survivorship odds, HCP perception of low receptiveness to fertility preservation discussion, and cultural, religious or financial barriers (King et al. 2008; Quinn et al. 2008; Quinn & Vadaparampil 2009; Tschudin & Bitzer 2009; Goossens et al. 2014). While some HCPs conceptualise fertility as a ‘woman’s issue’ (Adams et al. 2013), it has been reported that women are less likely than men to receive information about fertility after cancer, or to be referred for fertility preservation (Armuand et al. 2012), despite both incidence and 10-year survival rates being 100
higher for women aged 15–39 (Murk & Seli 2011). Women are also more likely to report infertility to be a source of psychological distress than men (Crawshaw et al. 2009; Crawshaw & Sloper 2010), suggesting a potentially greater need for information and support. However, there is little research evidence as to the reasons why gender differences in fertility information provision may occur. Satisfaction with information provided about cancer and fertility, when it is provided, is very low (Tschudin & Bitzer 2009), with psychological distress and negative feelings resulting from information needs about reproductive options not being met Carter et al. (2010). For women, long-term feelings of anger and injustice may arise if they feel they were offered inadequate fertility counselling prior to the commencement of treatment (Canada & Schover 2012). In contrast, for men, sperm banking is sometimes rushed into a few days after being diagnosed, with little regard for the emotional impact of the sperm banking process (Schover et al. 2002; Green et al. 2003). Fertility information is more likely to be provided to younger people (Goossens et al. 2014). This is reinforced by fertility guidelines which focus on adolescent and young adults (AYAs) under 25, resulting in a gap in fertility protocols which address older cancer patients (Letourneau et al. 2012), and reinforcing the invisibility of fertility concerns of older adults. However, oncologists have also reported ethical concerns in raising fertility issues with AYAs, because of the perception that raising fertility adds more stress to a family situation (Quinn et al. 2009), the limited options for fertility preservation for young women (Quinn & Vadaparampil 2009), and embarrassment about discussion of sperm collection on the part of young men or their parents (Vadaparampil et al. 2008). Previous research on HCP perspectives on discussing fertility with people with cancer and their partners has predominantly focused on speciality areas, such as paediatric oncology (Quinn & Vadaparampil 2009; Quinn et al. 2009) or breast oncology (Shimizu et al. 2013). Only a minority of studies have looked across speciality areas within oncology and fertility (Crawshaw et al. 2004) or across different HCPs (Barbour et al. 2013), with either doctors or nurses being the primary focus. This precludes the comparison of experiences and perspectives across professions. In addition, researchers have focused on HCPs who work with specific patient groups, such as men or women (de Vries et al. 2009; Bastings et al. 2014), specific age groups (Quinn & Vadaparampil 2009; Quinn et al. 2009; McQuillan et al. 2013) or specific cancer types (Shimizu et al. 2013). The primary method of data collection has been quantitative, through the use of HCP surveys. © 2015 John Wiley & Sons Ltd
Fertility and cancer HCP perspectives
While this provides important information about the nature and extent of communication about fertility after cancer across relatively large numbers of HCPs, it does not enable in-depth analysis of the subjective experience of these clinical interactions, or the potential complexity in the decision-making process. There has been some qualitative research that has examined discussion of fertility after cancer from the perspective of oncologists (Vadaparampil et al. 2008; de Vries et al. 2009), nurses (King et al. 2008) or allied health professionals (Crawshaw et al. 2004). However, this research has been based on a small number of participants, and has not examined differences across professions. The aim of this mixed-method study was to examine the perspectives of HCPs working in oncology and fertility on the subject of cancer and fertility, and to identify how these perspectives facilitate or provide barriers to communication and support, comparing primary health care (medical, nursing) and allied HCPs working with a range of patient gender, age groups and cancer types. The research questions were: Do HCPs consider fertility to be an important issue for cancer patients? Do they raise fertility as part of their routine clinical practice? If so, when and how do they do this? What are the perceived barriers to such discussion? METHOD Participants Two hundred and sixty-three HCPs took part in the research which formed part of a larger mixed-method project examining changes to fertility after cancer from the perspective of people with cancer, their partners and HCPs. Participants were a convenience sample recruited nationally through oncology and fertility professional networks, websites, email lists, newsletters, conferences and hospital clinics. The types of HCPs who responded to the survey included: nurses (41.4%), doctors (25.5%) and allied health care professionals (AHP) (33.1%) [including: clinical psychologists (13.7%), social workers (13.3%), other (6.1%)], with 87% of participants being women and 13% men; 38% were age 19–39, and 62% age 40–65. Their main areas of specialisation included: oncology/haematology (75.5%), breast cancer (9.6%), psycho-oncology support (6.1%) and fertility (3.5%). Participants had an average of 11.4 years experience working in oncology and/or fertility, with a range of 2 months to 40 years. The participants worked in both the private (64.2%) and public (12.7%) sectors, with 23.1% working in both. The majority (38.3%) worked in New South Wales, but respondents were from all states © 2015 John Wiley & Sons Ltd
in Australia, and three were from overseas. Of participants, 82.4% worked in a metropolitan area.
Procedure Survey Participants completed an online or postal questionnaire examining their knowledge about fertility in the context of cancer, experience and barriers in relation to communication, and intervention with patients and partners. It consisted of both open- and closed-ended questions, examining: perception of importance of fertility to patients and their partners; aspects of fertility perceived as important to patients and partners; whether fertility is addressed in normal clinical practice; characteristics of the patient taken into consideration when deciding whether or not to discuss fertility; when and how fertility is raised; why fertility is not raised; and training or information needs for health professionals.
In-depth interviews At the completion of the survey, participants indicated whether they would like to be considered to take part in a one-to-one interview to discuss fertility in the context of cancer in more depth. Of the 263 survey respondents, 62 responded positively to the invitation (57 women and 5 men). We purposively selected 49 participants for interview (N = 45 women, N = 4 men), comprising of 10 doctors, 25 nurses and 14 AHPs (eight social workers, five psychologists and a clinical pharmacist). Participants worked across a range of specialities: oncology/haematology (59%), adolescent/young adult cancer (10%), psych-oncology support (8%), breast cancer (8%), oncofertility (4%), bone marrow transplant (4%), familial cancer (4%) and fertility (2%). Individual semi-structured telephone interviews were conducted to examine HCPs’ perspectives on fertility in the context of cancer, their constructions and experiences of communicating about fertility with patients and their partners, and perceived support needed for HCPs and patients or partners to facilitate discussion of fertility concerns. The interviews were audio-recorded and ranged in duration from 30 to 90 min. All interviews were transcribed verbatim. To enhance the readability of the results, ellipses ‘(. . .)’ were used to indicate the omission of irrelevant sentences and words. Colloquiums such as ‘like’ and ‘um’ were also omitted for this purpose. Profession of HCP (Doc = doctor, Nur = nurse, Psy = psychologist, SW = social work), gender (man = M, woman = W) and participant number is given for longer quotes.
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Full ethics approval was obtained from the University and Local Health District Human Research Ethics Committees. The sample was voluntary and self-selecting as the participants made the choice to access and complete the survey. Participants were able to withdraw at any time without penalty. All data were stored according to guidelines of the National Health and Medical Research Council (2007).
Analysis Pearson v2 test was used to test differences for frequency data in survey responses across professional groups (medical, nursing, allied health). An alpha level of .05 was used for all statistical tests and g (effect size) is reported for principal outcomes. Thematic analysis (Braun & Clarke 2006) was used for the open-ended responses and interviews. This process involved two researchers (JC and AD) reading through the responses to each question and to the interviews to identify first-order codes: ‘importance of cancer and fertility’, ‘initiating the discussion’, ‘treatment regimes’; health care professional (HCP) factors in communication, including: ‘communication between HCP’; ‘division of responsibility’; ‘ethical and legal issues’, ‘HCP empathy and comfort’; influence of patient age, sexual orientation, cancer type, relationship status, number of children, rural/urban location; perceived patient factors, including: ‘adolescent and young adult issues’; ‘emotional reactions’, ‘willingness to discuss fertility’ and ‘support needed’. The entire data set was then coded using NVivo, a computer package that facilitates organisation of coded qualitative data. All the coded data were then read through by one of the researchers (AD) and codes were grouped into higher order themes. A careful and recursive decisionmaking process, which involved checking for emerging patterns, for variability and consistency, and making judgements about which codes were similar and dissimilar. The thematically coded data were then collated and reorganised through reading and rereading by JU, AD and JP, allowing for a further refinement and review of themes, where a number of themes were collapsed into each other and a thematic map of the data was developed. The qualitative and quantitative data were connected through a process of triangulation, which facilitated convergence and corroboration of data, with both data sets collected concurrently. The themes presented in this paper draw on both the quantitative and qualitative analysis: Fertility is an important concern for patients and their partners; strategies for talking about fertility; barriers to discussing fertility; and need for HCP training in discussion of fertility concerns. 102
RESULTS ‘It’s our professional responsibility’: fertility is an important concern for patients and their partners The majority of HCPs agreed that fertility is an important concern for people with cancer and their partners, with 67.2% of doctors, 78% of nurses and 73.5% of AHPs professionals rating fertility as ‘very important’, and no participants rating it as ‘not important’. This was also reflected in the qualitative data, wherein a number of HCPs described fertility as a ‘rising concern’ or a ‘major issue’ for patients, and ‘an essential part of every cancer patient’s discussion with their doctor’. Fertility was described as providing ‘hope for the future’ with NurW1 commenting that ‘discussion about fertility I suspect implies that there is a future’, and PsyW2 saying that ‘it represents choices that they did have control over’. Others identified the importance of fertility for identity and sexual relationships, as evidenced by PsyW3’s account: The whole issue of not being able to have children threads out into self-esteem, sense of belonging, sense of self-worth, and with that, you know, can obviously cause a number of problems with their relationships and then the view of themselves. But I think it also has these links with wider issues such as sexuality and feeling that if you’re not able to have children – that you have no worth in a relationship or you’re not sexually viable. Health care professionals surveyed demonstrated awareness of the aspects of fertility patients and partners were concerned about, including: the impact of cancer treatment on future fertility; decision-making (i.e. delaying having children or delaying cancer treatment to undergo fertility preservation); current infertility; psychosocial concerns; early menopause; impact of having hereditary cancer on future children; capacity to care for future children; and having realistic and accurate information about fertility preservation options. This is encapsulated in the following account: Will cancer treatment affect fertility? Is there time for fertility advice before treatment for cancer commences? Can fertility be preserved? Is sperm storage or egg harvesting possible? Will they be able to have a child after treatment? Could their treatment potentially affect future children? How soon after treatment can they start trying to conceive? Is assisted conception (IVF) a possibility if they can’t conceive naturally? (NurW4) © 2015 John Wiley & Sons Ltd
Fertility and cancer HCP perspectives
In the survey and interviews, issues for parents of paediatric patients were also acknowledged, including ‘consent and associated guilt’ associated with parents having to ‘make decisions on behalf of their children and consent to procedures that may impact their fertility’ (SWW5).
‘It can be a difficult discussion’: strategies for talking about fertility All HCPs surveyed and interviewed reported that they had discussed fertility with their patients. However, there was a significant difference across professions in how often participants reported addressing fertility. Doctors (50%) and nurses (50.5%) were significantly more likely than AHPs (23.9%) to ‘always’ address fertility with their patients (Table 1). For example, mentioning why she often did not discuss fertility with patients, one of the psychologists interviewed stated ‘I sometimes feel not informed enough, or that it wasn’t my role to discuss some aspects of fertility, but then I sort of want to hand it back, and then have it handed back to me, when [patients are] more informed’ (PsyW3). Another psychologist stated that ‘I wouldn’t necessarily go into details with the patients about it, only because it’s not an area of expertise for me, and I don’t feel I have sufficient information (. . .) it wouldn’t be fair to provide them with the wrong information’ (PsyW6). A number of doctors also said that discussion of fertility should be confined to specialists, as
precise knowledge of fertility was outside their area of expertise: ‘I think for a full discussion about fertility and to be counselled [patients] should be seen by a fertility specialist’ (DocW7). There was a significant difference between HCP groups when they first addressed fertility with patients, with doctors more likely to report that they addressed fertility during the initial consultation, compared to nurses and AHPs (Table 1). This difference may be explained by the concurrent finding that doctors were more likely to report that they raised fertility as part of their standard practice, compared to of nurses and AHPs (Table 1). For example, DocW8 stated that fertility is ‘something I would bring up to the patient in the first consultation when we (. . .) talk about treatment.’ In contrast, a NurW9 commented ‘these issues have usually been raised by the doctor before I meet the patient’ and SWW10 said ‘as mine is a secondary role I do not consistently raise it with every patient/partner’. AHPs were significantly more likely to raise fertility concerns only if they identified it as a particular concern for the person with cancer or their partner, compared to of doctors and nurses. While not significantly different across groups in the quantitative analysis, qualitative interviews indicated that many AHPs would normally address fertility only when the topic was broached by patients. For instance, PsyW2 stated that ‘my consultations are patient led based on the issues
Table 1. Health care professional (HCP) perception of importance of fertility Doctor Questions
n
I address the issue of fertility with people with cancer and/or their partners Always 29 Sometimes 28 Rarely/Never 1 When HCPs first address the issue of fertility At the first consultation 35 Before starting treatment 17 During or throughout the treatment 0 When the patient/their partner raises it 0 I never raise it 0 Prompts to raise the issue of fertility It is part of my standard practice 53 If I identify it as a particular concern for the person or his/her partner 19 The person or his/her partner raises it 18 If I feel that the person or his/her partner is open to the discussion 11 How HCPs raise the issue of fertility Provide verbal information 49 Ask if they have any fertility concerns 38 Ask if they want more specific information 33 Ask if they would prefer to speak to someone else 22 Provide written information 16 I never raise it 0
© 2015 John Wiley & Sons Ltd
Nurse
Test for group difference
AHP
%
n
%
n
%
v2
50.0 48.3 1.7
46 37 8
50.5 40.7 8.8
16 38 13
23.9 56.7 19.4
19.612
0.001
0.269
61.4 29.8 0.0 0.0 0.0
32 22 1 1 6
36.0 24.7 1.1 1.1 6.7
19 5 6 12 2
28.8 7.6 9.1 18.2 3.0
63.850
