Attitudes,Beliefs,and Trends Regarding Adolescent Oncofertility Discussions: A Systematic Literature Review

Informational and counseling needs

Most adolescent cancer patients desire to have children,^10,11 harboring existing expectations of becoming parents. ¹² Regardless of whether adolescents actively contemplate parenthood, fertility may form a part of their personal and social identities. ¹³ Thus, adolescent cancer patients wish to be informed about treatment-related fertility issues and FP options.^6,14,15 Though many would like assistance in accessing information about treatment-related fertility issues and FP options via the internet^16,17 or brochures,^18,19 neither can replace discussions with healthcare providers. ²⁰

Patients greatly value having access to fertility information or when hospital staff take the time to talk to them about fertility threats ²¹ and listen to their wishes and feelings. ¹⁶ Adolescents support having fertility matters raised at the time of their diagnosis. ¹³ One grounded theory study notes strong consensus among British adolescents that professionals should talk directly to them about these matters rather than to or through parents. ¹³ Though many value parental support, adolescents clearly desire to have a choice in who should be included in these discussions. ¹³ Since adolescent patients want to talk to their peers during all stages of their illness, ¹⁶ having opportunities to meet and talk with other adolescent cancer patients can be beneficial. Regardless of acceptance or refusal of FP, adolescent patients appreciate having the option offered to them. ²² For those males who choose to bank sperm, the prompt return of sperm analysis results is a source of comfort. ²² None of the studies included in this review report similar findings for females (e.g., a specific desire to know oocyte analysis results soon after procurement).

Causes of distress

Oncofertility discussions and decisions do not always go smoothly for adolescents. Many feel rushed into making a decision about FP at a time when they feel overburdened with information and shocked by the cancer diagnosis. ²³ Some find these discussions difficult either because of disagreement with parents or due to strong pre-formed desires to become a parent. ¹³ A cause of distress for some adolescents is professionals' misperception of their interest in fertility as less important than it actually is. ¹³ For those who choose to undergo FP, discontent arises when professionals do not clarify that questions about posthumous use of banked samples are routine for all (including non-cancer) patients, since adolescents could interpret such questioning to insinuate poor prognosis. ²² Some male adolescents do not appreciate having their parents accompany them to the assisted conception unit (e.g., sperm bank). ²⁴ Many male adolescents become anxious on the way to the sperm bank and are distressed if they are not warned that attempts to masturbate might fail or that accompanying persons are seated near the semen collection room. ²² Reviewed literature did not note any female anxiety with respect to oocyte cryopreservation procedures, such as vaginal ultrasounds or taking hormones for hyperstimulation. At the conclusion of cancer treatment, adolescent survivors can experience psychological distress with respect to their uncertain fertility status.^25,26

Sex differences

In one American online needs assessment of young adult cancer patients and survivors (aged 18–40 years; diagnosed 15–35 years), female patients rank the need for fertility information and services significantly higher than males do. ²⁷ While none of the literature included in this review discusses how this differential need might be socially constructed, a German cross-sectional study of cancer patients aged 18–45 years notes females' greater desire prior to diagnosis to have children. ¹⁰ However, more males recall discussions regarding fertility and FP than females do,^20,28 and in a British cohort study of survivors (aged 14–23 years; diagnosed 13–21 years), significantly more males than females recall having them before the start of treatment. ²⁶ As healthcare professionals and female patients become more aware of fertility issues in recent years, this gendered disparity in timing of discussions becomes less apparent, whereby female survivors that recall discussions report them occurring more often before the start of treatment. ²⁶ Regarding FP informational pamphlets, the majority of female adolescents prefer reading them with their parents, while males prefer reading them on their own.^18,29

Gendered differences in adolescent survivor satisfaction with information provided during oncofertility discussions reveal relatively high satisfaction for male adolescent survivors and comparatively low levels for their female counterparts. ²⁶ This discontent could be due to: (1) lack of established FP options for females (at the time of the study), (2) female survivors' frustration with professionals' inability to accurately assess fertility reserve at the conclusion of treatment, and/or (3) some female survivors' regular reminder of their impaired fertility status after treatment (e.g., for those that experience amenorrhea), whereas males lack such obvious indicators of sub-fertility. ²⁶ An exploratory qualitative study carried out in England highlights the fact that uncertainty over fertility status appears to affect females more than it does males, possibly because female survivors could be more anxious over the fact that pregnancy for them can lead to obstetric complications or a risk of cancer relapse. ²¹

Female and male adolescent cancer patients differ in their willingness to postpone cancer treatment for FP. A delay for female patients is usually between 2 and 6 weeks, while a delay for male patients is between 24 and 72 hours. Though both might be interested in FP, the decision for female adolescents is quite complex, considering that the procedure involves a significant delay in cancer treatment of up to several weeks.^15,30 On the other hand, in a survey of male patients who were approached to bank sperm at one American hospital, all perceive sperm banking as important enough to warrant postponing cancer treatment for a few days. ³¹

Age differences

In a study of cancer patients and off-treatment survivors between the ages of 18 and 39 years and diagnosed between 15 and 35 years, younger respondents and those diagnosed at younger ages report significantly higher needs for fertility information and services at the time of their diagnosis. ²⁷ Another study of 55 male patients between the ages of 13 and 21 years possibly explains that this differential need could be due to the fact that younger patients experience greater levels of anxiety at the time of diagnosis and have more difficulty in talking about fertility than older adolescents. ²⁴ Adolescent patients who attempt to bank their sperm but are unsuccessful also tend to be significantly younger than those who succeed at producing a semen sample. ²⁴

Age might explain differences in recall or receipt of treatment-related infertility counseling. ^* One large-scale national German survey reports that pediatric cancer survivors diagnosed at 13 years of age or above are able to recall such counseling significantly more often than those diagnosed before puberty. ³² It is unclear whether these age differences are solely applicable to recall or also receipt of counseling because the study lacks data on actual provision of information.

Age can also influence information processing. In focus groups with healthy adolescents about their perceptions of cancer and fertility, age does not affect their predictions of eventual acceptance of fertility status, whatever it would be. ¹² However, prior to such a phase of acceptance, in an attempt to search for areas of control in their life, some older adolescents (15–18 years old) speculate that they would blame or associate their infertility with cancer or its treatment. ¹² In contrast, younger adolescents (12–14 years old) do not seem to place blame anywhere because they do not believe they have control over their fertility. ¹²

For other themes within the category of adolescent patient perspectives, please refer to Table 3.

Informational and counseling needs

Like their children, parents want information about treatment-related infertility issues. ¹⁴ Even if parents are informed, not all recall such discussions. ³³ Child's age at diagnosis and treatment intensity seem to affect parental recall. Parents of pubertal patients and those receiving treatment that is more likely to endanger fertility have the best recall. ³³ While most parents in a British postal survey of 303 families report that fertility issues are discussed with them in a sensitive manner, they still feel that their informational needs at the time of diagnosis are unmet. ¹⁶ Parents wish for fertility specialists to be involved in such discussions, ³⁴ and want FP to be presented as part of their child's treatment “package.” ³⁵ Some parents desire hospital staff to provide more written and verbal information about oncofertility issues to patient's siblings. ¹⁶

Parents also need information on when and how their child's fertility can be tested, as well as guidance in how to communicate with their child about the issue as s/he matures. ¹⁷ Parents want information brochures to include testimonials from other childhood cancer survivors' experiences with fertility^29,35 and information on financial assistance for FP, as well as examples of counselors and adoption agencies specializing in cancer survivors. ¹⁸

Parental information and brochure design preferences can vary according to cultural background. English-speaking American parents feel advanced terminology should be modified for their children, while Spanish-speaking American parents believe it is important to include advanced terminology because these are the terms that are used in practice. ²⁹

Parents' understanding of adolescents' needs and concerns

A pilot study carried out at two pediatric oncology centers in the United States reports that parents often underestimated their daughters' concerns about future fertility when impacted by a cancer diagnosis. ³⁶ (The current review does not include any similar studies with sons.) Reasons for this underestimation include parental focus on survival overshadowing adolescent normative developmental experiences and communication patterns between both parties regarding the topics of sex and reproduction. ³⁶ Parents' culture might affect concordance between parental and child preferences and concerns. For example, in one American qualitative study, Spanish-speaking American parents more frequently express their openness to discuss fertility issues with their adolescent child compared with their English-speaking counterparts. ²⁹ The latter group often misperceives their child's preferences with respect to content, quality, and desire for oncofertility information, while the former group tends to hold similar views to those of their child. ²⁹ Education level may be another factor, since the above American quantitative pilot study indicates that most parents who accurately predict their child's concerns have a bachelor's degree. ³⁶

For other themes within the category of parent perspectives, please refer to Table 4.

Varying beliefs regarding oncofertility

A few studies investigate how important oncofertility issues are to physicians. One American online survey of pediatric oncology specialists finds that fertility threats to adolescent patients are a major concern to physicians. ³⁷ Due to the survey's low response rate of 15%, the authors note that the results may suffer from a strong voluntary reporting bias. A couple of qualitative studies report physicians' varying beliefs regarding the importance of infertility, with some feeling it to be a serious quality of life issue, and others prioritizing disease assessment and treatment planning.^38,39 Additionally, though most U.S. pediatric oncologists in the aforementioned online survey agree that pubertal patients should be told about the potential effects treatment can have on their fertility, only 79% think pubertal patients should be referred to a FP specialist prior to treatment. ³⁷

One qualitative study notes disagreement among British fertility and pediatric oncology professionals as to whether patients or professionals ought to initiate oncofertility discussions. ⁴⁰ Furthermore, when healthcare professionals believe that they should initiate these discussions, they have multiple opinions as to which specific professional should be responsible for doing so. Some oncologists believe that the responsibility should fall on other professionals, ²⁵ particularly oncology nurses who are in an ideal position to discuss such quality of life issues because of their multiple interactions with patients prior to the start of treatment.^41,42 The majority of nurses and nurse practitioners believe FP discussions to be their responsibility,^41,43 and only a small number feel social workers and/or child-life specialists ought to have this responsibility. ⁴³ In a cross-sectional survey of 58% of all Dutch pediatric oncologists, almost all believe that it is their responsibility to discuss infertility with patients or parents, while only three-fourths feel they also have the responsibility to discuss FP options. ⁴⁴ Although the majority of 24 American pediatric oncologists in a qualitative study report they feel comfortable having oncofertility discussions with patients and families, some would like nurses and social workers to have follow-up discussions with the patients. ³⁹

A few studies indicate healthcare professionals' opinions that go counter to conventional clinical ethical norms. Many healthcare professionals in an American cross-sectional survey think that adolescent patients should be told about FP and involved in such decision making, regardless of parental knowledge or consent. ⁴¹ A Dutch multicenter qualitative study of 14 physicians present similar findings. ⁴⁵ Physicians maintain this attitude specifically with respect to sperm banking, arguing that parents unreliably predict their son's sexual maturity. ⁴⁵ Furthermore, some healthcare professionals in a Scottish qualitative study acknowledge feeling justified in swaying patients toward making what they perceive as the “right” decisions. ²⁰

Variation in practice

The literature is inconclusive as to whether most healthcare professionals discuss oncofertility issues. Some surveys report that a majority of pediatric oncologists talk about fertility issues with patients and their families.^39,44,46,47 Other studies indicate that pediatric oncologists and nurses infrequently or inconsistently hold such discussions.^{25,42,48–51}

Variation not only exists in professional discussion patterns, but also in referral patterns. Healthcare providers acknowledge that they discuss FP options and make referrals far more for boys than for girls.^46,52 (This trend might be attributable to the fact that at the time of these studies' publication, oocyte cryopreservation was considered an experimental technique.) Surveyed healthcare professionals at one pediatric hematology/oncology department in the United States deem the success rates for female FP to be too low to justify pursuing it. ⁵³ Disparate referral rates could also reflect the fact that most medical centers are more likely to have sperm-banking services on offer than female FP options.^51,54,55 However, even within the realm of FP services for males, there seems to be great variation. ⁵⁶

There is little consensus among North American pediatric cancer centers regarding standard practice for FP, such as clinical indications for offering suitable techniques. ⁵⁴ As the literature notes, in the absence of clear guidelines, inconsistencies in fertility counseling endure, including who is an appropriate candidate for FP ⁵⁷ or whether to approach the adolescent first, the parents first, or both together.^14,39,40,58 Some interviewed physicians suggest that assessing a patient's maturity can help determine whether discussions should be had with the patient and parents together or individually. ³⁸

Input on how to have successful oncofertility discussions

Healthcare professionals report numerous elements that help facilitate oncofertility discussions. Many in qualitative studies feel that it is vital to approach the issue in a professional manner, providing information in a clear, open, honest, and developmentally appropriate way.^38,40 Some endorse an individualized rather than standard approach, based upon assessment of the patient's maturity.^38,59 The availability of educational materials for patients and parents increases the likelihood of oncofertility discussion.^42,43,50,60 Standardizing the process for offering FP makes conversations easier, more streamlined, and more matter-of-fact because healthcare providers become comfortable with the topic and expert in the specific skills needed to facilitate fertility referrals. ⁶⁰ Protocol use can also help facilitate timely FP, preventing cancer treatment delay. ⁵⁹

Regarding the content of the discussion, some interviewed physicians acknowledge the importance of specifying that preserving gametes does not guarantee that the patient will be able to later conceive a biological child. ³⁸ Some also believe that despite the difficulty in discussing it, addressing post-mortem ownership rights over preserved gametes is essential.^38,40

Barriers to oncofertility discussions

b) Professionals' attitudes or misperceptions

Numerous studies note professionals' discomfort with the topic as the key barrier to having oncofertility discussions.^{19,25,38,48,60,61,63–66} Such discomfort is partially due to language and cultural differences between professionals and patients/parents. ⁶⁴ Some interviewed professionals feel embarrassed discussing masturbation with male adolescents, ³⁸ especially when parents are present. ⁴⁸ Lakhani suggests that physicians specifically feel uncomfortable when their medical advisory role shifts to a more psychosocial one, for which they have not necessarily been trained. ³⁸

Another barrier to oncofertility discussions is professionals' biases. ⁶⁷ Professionals may not recognize how important fertility can be for patients and parents. Adolescent shyness or embarrassment over discussing it in front of parents can be easily misconstrued as disinterest or embarrassment over discussing the topic in general,^47,49,65 when it may be just initial unwillingness. ⁶³ Moreover, while patients and their parents do not usually cite cost as a factor in FP decision making, ⁴⁹ some professionals assume that families are unable to pay for FP.^{49,50,60,64,65,67} The aforementioned Dutch cross-sectional study also highlights professionals' lack of confidence in the effectiveness of FP techniques. ⁴⁴ Some professionals consider adolescent patients, especially those in early puberty, to be too young to consider such issues.^20,46,60,61 Others are biased against offering FP options to HIV positive^42,43,50 or openly homosexual patients.^42,50

c) Patient or family characteristics

The barrier that professionals claim most likely hampers their attempts to discuss oncofertility routinely with adolescent patients and their families is poor prognosis.^{25,37,41,42,44,46,47,50,64,65,67} Professionals feel that it is inappropriate to bring up such considerations in these cases, believing that doing so “adds insult to injury” for these distraught families. Furthermore, professionals consider it moot to discuss oncofertility when risk of treatment-related infertility is not significant ⁴⁶ or initial prognosis is good. ²⁰

Urgency to start treatment due to aggressiveness of cancer can be a barrier to oncofertility discussions and may leave little time to make fully informed decisions about FP.^{20,37,38,40,42,47,50,58} The authors of one American qualitative study report that because pediatric cancers have rapid onset and quick progression, sometimes pediatric oncologists will discuss treatment's possible effects on fertility but not FP options. ³⁹

For other subthemes with the broader theme of barriers to oncofertility discussions, please refer to Table 5.