Psychological Impact and Barriers to Fertility Preservation in Male Cancer Patients


Individual

Institutional

•    Cost

•    No FPC by a physiciana

•    Insufficient time

•    No referral for FP by a physiciana

•    Scheduling concerns

•    Medical staff discomfort

•    Religious/ethical concerns

•    Lack of knowledge

•    Embarrassment

•    Lack of training

•    Concern about future use of gametes

•    Disparate FPC

•    Anxiety/distress

•    Disparate referral for FP

•    Lack of familial support

•    Assumptions about patient desire

•    No interest in having children
 

aTwo of the most important barriers. FPC =fertility preservation counseling





Patient-Based Barriers to FP


One of the greatest barriers to cancer patients’ completion of FP has been argued to be the cost of FP. Indeed, the cost of FP for women is often several thousand dollars in out-of-pocket costs and is significantly greater than for men, and as such FP cost has been found to be a barrier for women. However, cost has also been found to be a barrier for men in as many as 38% of male cancer patients [14, 19, 31, 35, 42]. Additionally, greater time is required to complete FP for women (approximately 2 weeks [43]) than for men. Although having insufficient time (or the perception of insufficient time) to complete FP prior to beginning cancer treatment has been found to be a greater barrier for FP among female cancer patients than for male cancer patients (39% vs. 25%), male cancer patients also frequently report such barriers to FP [14, 19, 31, 39, 44, 45].

There are multiple other patient-based concerns that may limit a male cancer patient’s participation in FP. For example, males (or their partners or families) may have ethical or religious concerns about the use of cryopreserved gametes for fertility treatment in the future, they may be concerned about the risks to children conceived with cryopreserved sperm or about the risk of cancer to children conceived with their gametes, [14, 40, 4648] they may be concerned about the future cost of fertility treatments [49, 50], and/or they may be concerned about the complexity of scheduling FP [14]. Additionally, male cancer patients may avoid FP if they find the provision of sperm to be embarrassing or awkward [14, 3234, 44], they may desire to avoid thinking about the possibility of infertility [14, 32], they may be anxious to complete their cancer treatment, and/or some males may not desire children (or additional children) in the future [14, 31, 40, 42]. Friends and family members of the patient may also influence the completion of FP particularly if parents of minor male children do not consent for FP or FPC [14, 39] or pressure minor children to undergo FP [11, 34] or if partners of adult males are not supportive of FP [14, 40].


Institutional Barriers to FPC and FP


Although patient barriers to FP have been identified, it may be that the greatest barriers to FP and certainly to FPC are institutional in nature. In particular, it appears that without FPC and referral for FP from a medical provider, many patients do not complete FP. This appears to be particularly true for male cancer patients. For example in Achille et al.’s (2006) [14] qualitative study of male cancer patients , one patient stated:

If the doctor had told me do it, I would have done it, that is clear. But because he did not insist [. . .] it did not seem that important to do it [14].

In another study of adult survivors of childhood cancer and their parents, parents also expressed their belief that they would have encouraged their sons to participate in FP if their physician had encouraged it:

If they had said something about [fertility preservation], we would have thought more about it [10].

It appears that if FPC and referral for FP are initiated by a physician, a large majority (as many as 99% of male cancer patients) may go on to complete FP [11, 34, 45, 51]. For example, a large study of male cancer patients referred for FPC and FP in France (N = 4345) between the ages of 11 and 20 years found that 99% (n = 4314) of patients attempted to completed FP via masturbation with only a small number of men (n = 31) who refused FP and only 7% of men (n = 310/4314) who were unsuccessful in providing a sample. Of the 93% of males who completed FP, 83% had a sample of high enough quantity and quality to cryopreserve and 81% were able to provide two or more samples [51]. Although a large majority of men in the study were able to participate in FP, it should be noted that in this study cost was unlikely to be a barrier to treatment as costs are covered by national insurance; thus rates of FP may be lower in populations where FP costs are out of pocket for patients. Further, given that 17% of men were unable to have a sample cryopreserved it is important that male cancer patients understand that the successful completion of FP varies as some men are unable to produce samples and some men produce poor-quality samples [4, 11, 52, 53]. It is also important that male FP candidates be aware that successful sperm cryopreservation does not guarantee future live-born offspring and thus should not be referred to as an insurance policy for future fertility [5, 42].

Another example of the role of FPC and referral for and completion of FP comes from a study of 4881 men who were diagnosed with cancer between the ages of 18 and 55. Of study participants, 411 men were offered a consultation for formal FPC and 75% (n = 306) of these men participated in FPC. Ultimately 87% (n = 266) of those who received FPC underwent FP [53]. Other studies however have found much lower rates (18–56%) of FP among male cancer patients who received FPC [5, 4042, 54]. It may be that the age of the studied patient populations (or other sample differences) and insurance coverage for FP are driving the higher acceptance of FP as it appears that younger adult males and men with insurance coverage for FP are more likely to participate in FP [5, 4042, 5355].

Yet another barrier to FPC and referral for FP may be medical staff discomfort with such concerns. In a study of pediatric physicians and nurses specializing in pediatric oncology, approximately 20% of physicians and advanced-practice nurses and nearly 50% of nurses reported some discomfort in talking about FP with their patients. Additionally, greater than half of each group lacked sufficient knowledge regarding fertility treatments and nearly all participants (93%) indicated that they received no training on FPC [15]. Similarly other studies of oncology specialists (primarily oncologists) in the USA and the UK have found that as many as 39–58% of medical providers lacked sufficient knowledge of various fertility treatments as well as national guidelines on FPC [8, 14, 29, 37, 39, 56, 57].

Additional barriers to FPC and referral for FP from medical providers may arise when providers have medical or cancer-treatment-related concerns such as a patient’s poor prognosis [9, 14, 37, 39] or the provider’s concern that there is insufficient time to bank sperm prior to the onset of cancer treatment [29, 37, 39, 44]. Medical providers may also however provide disparate FPC and referral for FP based on their assumptions about patient desire for FP. Multiple studies have found that providers base the provision of FPC and referral to FP on their own assumptions about a patient’s desire for FP based on the patient’s age, sexuality, desire for children, or other assumptions about the patient such as their inability to afford treatment [8, 14, 29, 37, 57].

Although not assessed in identified studies of FPC among male cancer patients, given the evidence of disparate FPC to patients based on their sexuality , it is likely that disparities in FPC and referral to FP may also exist among transgender female cancer patients (born biologically male). Physicians may incorrectly assume that transgender women do not want children or that their children are at risk of psychological harm as a result of their identity; however research finds that transgender individuals have similar desires for parenthood as cisgender individuals whose socially assigned gender identity and biological sex are consistent [5860] and there appears to be little to no risk for children of transgender parents [61]. Unfortunately, research showing low rates of FPC for noncancer transgender patients supports these concerns [59, 60].


Emotional Consequences of Disparate FPC and Referral to FP


Evidence of disparate FPC and referral to FP among biologically male cancer patients is concerning as such disparate treatment has been associated with increased risk of negative emotional outcomes for patients. Feelings of shock, sadness, anger, and a lowered self-esteem are not uncommon among male cancer patients who did not receive FPC [62]. Additionally, Stein et al.’s (2014) [10] qualitative study of adult childhood cancer survivors beliefs about FP revealed that regret associated with lack of adequate FPC was the most common theme among all respondents. Parents of survivors in this same study expressed feelings of guilt that they did not raise concerns about their son’s future fertility at the time of their cancer treatment. For example, two parents expressed feelings of parental failure by not facilitating their engagement in FP:

I should have protected him [10].

I did nothing, and then I lived with torment for years [10].

In the same study by Stein et al. (2014) [10], both survivors and their patients believed that the lack of FPC was a failure on the part of oncologists who should have been responsible for raising the issue. Given that previous research has found that greater than half of young men diagnosed with cancer desire future children, failure to discuss FP will also likely result in psychological distress should these men not be able to reproduce [10, 63].

Regret related to FPC may also arise for male survivors of cancer who received FPC, as they have been found to report regret that insufficient time was dedicated to FPC. For example, one male survivor of pediatric cancer stated:

I was only 16 years old, and you just weren’t that concerned about it at the time. Looking back I kind of wish they had set aside a time or an appointment, more than just like 2 minutes [10].

It appears that medical providers may have limited time available to discuss FP with newly diagnosed cancer patients as one study of oncologists indicated that nearly half (46%) of these physicians spent only 0–5 min on FPC with patients [29]. Research finds that there are a myriad of psychological issues involved in FP decision making that are unlikely to be sufficiently addressed in as little as 5 min.

First, patients who are newly diagnosed with cancer are emotionally preoccupied with news of their diagnosis [64, 65] and are often worried about their long-term survival. Cancer patients also frequently report body image concerns and concerns regarding future sexual functioning (particularly for patients who undergo orchiectomy [66, 67]) which may affect the development or continuation of romantic relationships. Men who are told that their fertility may be affected by their cancer treatment have also been found to worry about their future desirability as a partner [33, 48, 62, 68, 69]. For example, in a qualitative study of male childhood cancer survivors by Nilsson et al. (2014) [68] one survivor (age 23, diagnosed with cancer at age 8) stated:

I have a follow up question! At what time in a new relationship should you tell your new partner ‘I might not be able to have children because of my disease [68].

In another qualitative study of male cancer patients’ cancer-related fertility concerns , men reported not only being concerned about the effect of their infertility on finding a future partner, but also the effect that it could have on their parents:

Before I started on chemotherapy they didn’t take any sperm sample, didn’t freeze any sperm. So to be told as an 18-year-old guy, ‘You’re not gonna have children,’ that’s devastating, that’s really sad. And also for my parents to know that they’re not gonna have any grandchildren by me and I can’t imagine you know that’s, and how do I go into a relationship and say, ‘I can’t have children,’ am I gonna face instant rejection? [33].

The emotional toll of a cancer diagnosis is so significant that it is frequently associated with symptoms of depression and/or anxiety [7080]. Given the often short time period between diagnosis and decision making for FP it is not surprising that a newly diagnosed cancer patient’s emotional state has been associated with decision making. Indeed, previous research has found that the majority (58%) of male cancer patients acknowledge that anxiety negatively affected their decision regarding pursuing FP [52]. For example, in one study of survivors of testicular cancer one patient reported:

Diagnosis was an emotional time. It was not really possible to think clearly about the desire for future children at the time of diagnosis [42].

In another qualitative study of recently diagnosed male cancer patients, one man expressed his regret at the way in which his cancer-related anxiety affected FP decision making:

They did offer sperm banking but I actually declined it simply because I was in a bit of a state. I’d had a real shock and this was something that was making it worse really, to have to go and do that [bank sperm]. And I was feeling pretty awful. Well I declined and it’s a decision which [pause] I think was the wrong decision now, but it’s easy to look back and say that it was the wrong decision, when you’re in that situation, you know, maybe it is [33].

It appears that the time-sensitive nature of decision making regarding FP leaves little time for emotional recovery from news of a cancer diagnosis and that the patient’s preexisting cancer-related anxiety may be increased as a result of the need to balance desire to begin cancer treatment with desire for future fertility [14, 33, 44]. Distress may be further increased among patients who are unable to afford FP and/or patients who are unable to participate in FP due to religious, ethical, or other concerns.

For patients who chose to undergo FP, there are multiple other potentially anxiety-provoking or otherwise emotional decisions which need to be made both at the time of FP and in the future. These largely pertain to the disposition of cryopreserved gametes. Patients who pursue FP often do so for emotional reasons, to prevent future regret if they are later found to be infertile but desire genetic children [41]. However, little to no research exists which has assessed the degree to which patients were counseled about or held realistic expectations regarding the use of cryopreserved gametes to achieve live birth nor their emotional reactions should their frozen gametes fail to result in a live-born child. Additionally, it is unclear how men who choose to pursue FP only to not return to use their gametes will feel about their decision.

Research finds that similar to women who pursue FP, few men return to use their gametes or make other disposition decisions [4, 5, 53, 8183]. It is unclear why men who pursue FP do not return to use their gametes . It may be that men who do not return to use their sperm as they are too young [4] do not understand the potential effects of cancer treatment on their ability to have children, desire to avoid thinking about the possibility of infertility for fear of how that knowledge would affect them emotionally, are not yet ready to have a child, cannot afford to begin fertility treatment, and/or are not ready to make a disposition decision regarding their sperm [36]. Further, some men who complete FP will unfortunately die as a result of either their disease or some other factor [81, 84]. Men who complete FP must make a decision about the disposition of their genetic material in the event of their death. For these men sensitive discussion of their beliefs and desires regarding posthumous assisted reproduction should be conducted at the time of FP and may result in increased anxious or depressive thoughts about their mortality and/or ethical concerns [85, 86]. Failure to appropriately counsel patients regarding gamete disposition could result in future distress for patients and their partners or families. It is unclear if such detailed discussions are occurring at the time of FPC or FP as one male cancer survivor expressed his distressed realization after a breakup that he consented to allow his partner to use his gametes in the event of his demise:

At the time I was diagnosed I was in a long term relationship and I put her name on it and got up to probably a year afterwards when I split up with her. So like maybe a couple of years after I’d been diagnosed, had my treatment and everything. Then it dawned on me that she would have quite a lot of power if anything was to happen to me, if she said yes I want to have his children then my mum and sister wouldn’t be able to say ‘no psycho’ [36].


Recommendations for Psychological Counseling of Male Cancer Patients Considering FP


Decisions regarding the pursuit of FP are psychologically complex in the context of the patient’s current cancer diagnosis and have potential emotional ramifications that extend beyond completion of cancer treatment [85]. Consistent with multiple professional medical guidelines and with recommendations for female cancer patients [7, 16, 56, 85] it is therefore recommended that pretreatment psychological counseling by a mental health professional with specialty in reproductive medicine be strongly recommended (if not required) for all male cancer patients who receive FPC (see Table 19.2). Further, in light of the influence of family members and partners on decision making for FP, a patient’s partner and/or when appropriate their parents should be included in counseling with the mental health professional. The inclusion of an appropriately trained mental health professional in FPC allows for greater opportunity for discussion of relevant psychological issues as mental health professionals typically are able to see patients for consults ranging as long as 50 min or more.


Table 19.2
Recommendations for psychological counseling in male fertility preservation (FP)



























•    Pretreatment counseling [of patient and partner/parent(s) if appropriate] by a MHP with specialty in reproductive medicine is strongly recommended for all patients who receive FPC

• Counseling should include discussion of:

     • Current/past mental health history

     • Influence of all relevant parties’ distress on decision making

     • Relationship status and influence on decision making

     • Realistic treatment expectations

     • Current and future religious/ethical concerns about FP

     • Beliefs regarding posthumous reproduction

     • Future emotional and financial risks/costs of FP

     • Decision making and regret

     • Openness to alternative family building


FPC = Fertility preservation counseling, MHP = Mental health professional.

Mental health counseling of FP patients should include a sensitive discussion of patients’ (and their partner’s or parent’s if appropriate) preexisting and current psychological status as well as the role of a patient’s, their partner’s, or their parent’s current distress on decision making. Giving the possible role of familial/relationship influence or coercion in decision making, relationship status and presence of coercion should be evaluated. Further, it is recommended that the mental health professional assess and discuss the degree to which patients hold realistic expectations regarding their ability to successfully complete FP and father genetic children in the future. If not already understood, patients should be counseled that FP should not be viewed as an insurance policy which guarantees future family building. Patients should also be counseled about the potential future emotional and financial costs and ethical concerns associated with the use of their gametes with assisted reproductive technologies. Patients who complete FP only to be unable to afford or otherwise engage in appropriate future fertility treatments are at risk of emotional distress . Additionally, patient’s religious or ethical concerns associated with masturbation, the disposition or destruction of cryopreserved gametes, and the use of genetic testing in fertility treatment should also occur prior to the completion of FP. Mental health counseling regarding the emotional consequences and ethical concerns associated with the disposition of gametes should also include a sensitive discussion of patients’ beliefs about posthumous assisted reproduction [85]. Although many male cancer patients appear to find posthumous reproduction an acceptable means of gamete disposition [87], a thorough discussion of the relevant psychological and ethical issues is warranted. Finally, it is recommended that mental health professionals discuss patients’ decision making in relationship to future regret. Men may regret delaying cancer treatment for FP if they later experience a recurrence of their disease or some other negative medical outcome or if they are unable to achieve future live birth with their gametes. They may also experience regret if they decline FP only to later discover that they are infertile. Thus for men who decline FP, openness to alternative family building strategies (e.g., donor sperm, adoption) should be discussed. Finally, mental health counseling regarding regret should be careful to avoid emotional coercion which could serve to pressure patients into completing FP [85].

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Feb 26, 2018 | Posted by in GYNECOLOGY | Comments Off on Psychological Impact and Barriers to Fertility Preservation in Male Cancer Patients

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