Oncofertility Decision Making: Findings from Israeli Adolescents and Parents

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Article

Reference

Oncofertility Decision Making: Findings from Israeli Adolescents and Parents

BARLEVY, Dorit, et al.

Abstract

To date, few studies qualitatively investigate adolescent oncofertility decision making. This qualitative study seeks to understand the experiences of adolescents and parents in making oncofertility decisions within the pronatalist context of Israeli society.

BARLEVY, Dorit, et al . Oncofertility Decision Making: Findings from Israeli Adolescents and Parents. Journal of Adolescent and Young Adult Oncology , 2018

DOI : 10.1089/jayao.2018.0016 PMID : 30153089

Available at:

http://archive-ouverte.unige.ch/unige:111167

Disclaimer: layout of this document may differ from the published version.

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Oncofertility Decision Making:

Findings from Israeli Adolescents and Parents

Dorit Barlevy, MA,¹ Tenzin Wangmo, PhD,¹Shifra Ash, MD,² Bernice S. Elger, MD, PhD,¹ and Vardit Ravitsky, PhD³

Purpose:

To date, few studies qualitatively investigate adolescent oncofertility decision making. This quali- tative study seeks to understand the experiences of adolescents and parents in making oncofertility decisions within the pronatalist context of Israeli society.

Methods:

Semi-structured interviews were conducted in Israel with adolescents between the ages of 12 and 19 years who were in remission for at least 2 months and had been offered fertility preservation (FP) of sperm, ova, or ovary cryopreservation, and their parents, separately. Transcripts were thematically analyzed.

Results:

Thirty-five interviews were conducted—16 with adolescents and 19 with parents—representing 20 cases of FP decision making. Adolescents and parents do not necessarily view decision making in the same way. Both parties mention a variety of factors in and justifications for FP decisions. Although most participants imagine the adolescent will use cryopreserved biological materials only if s/he experiences reproductive difficulties, nearly all participants do not recall having discussed what to do with these materials in the case of death. Many adolescents and parents feel comfortable waiting to take further action regarding adolescent fertility until the topic has greater relevance to the adolescent’s life. Satisfaction with FP decision making is nearly unanimous, regardless of whether FP was pursued.

Conclusion:

As in other cultural contexts, Israeli adolescents and parents demonstrate multifaceted decision making with respect to oncofertility. A significant finding from this study suggests that health professionals shy from discussing posthumous planning of cryopreserved materials with adolescent cancer patients and their parents. Further investigation is warranted to determine whether this is a uniquely Israeli phenomenon, the cause for it, and how to overcome it.

Keywords:

fertility preservation, decision making, oncofertility

Introduction

W

ith increasing survivalrates of adolescent cancer patients, oncologists can pay greater attention to quality of life issues in survivorship.¹Due to the use of gonadotoxic agents in treatment, a salient quality of life issue for survivors of adolescent cancer is possible threat to fertility.^2,3Many studies explore health professionals’ beliefs, practices, and barriers to conducting oncofertility discussions.^4–16Such discussions include explanation of the possible effects of cancer treatment on a patient’s fertility and available fertility preservation (FP) options. However, few studies qualitatively investigate adolescent and parental decision making following such discussions.^17–23 Furthermore, such studies examine FP decision making in limited cultural contexts.

Israel offers a pertinent and unique setting to investigate adolescent FP decision making. Inexplicably, Jews in Israel

have one of the highest rates of adolescent cancer in the world.²⁴ Among so-called Western democracies, Israel is known for specific cultural attitudes that are influenced pre- dominantly by its Jewish identity. It is informative to examine attitudes in this unique cultural setting, which differs from any other Western democracy, since attitudes and val- ues underlying FP are highly influenced by cultural contexts.

Israel is a pronatalist nation, where public funds not only cover the costs of IVF for all Israeli women, up to the birth of two children per relationship, but also FP for medical reasons and subsequent storage of cryopreserved biological materials for a limited time.²⁵

This qualitative study investigates adolescent oncofertility decision making in Israel, specifically from the perspective of adolescents and parents. It seeks to understand the multiple aspects of and reasons for such decisions and to determine how these decisions within the

1Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.

2Schneider Children’s Medical Center of Israel, Petach Tiqva, Israel.

3Bioethics Program, School of Public Health, University of Montreal, Montreal, Canada.

JOURNAL OF ADOLESCENT AND YOUNG ADULT ONCOLOGY Volume 00, Number 00, 2018

ªMary Ann Liebert, Inc.

DOI: 10.1089/jayao.2018.0016

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Downloaded by Université de Genève from www.liebertpub.com at 09/20/18. For personal use only.

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Israeli context compare to those explored by other Western studies.

Methods

After conducting a thorough systematic literature review of adolescent oncofertility discussions,^26,27 the authors devised two semi-structured interview guides—one for adolescents and another for parents. The study, along with its interview guides and consent forms, was approved by the Swiss Cantonal Ethics Committee (EKNZ 2014-307) and Schneider Children’s Medical Center’s Research Ethics Committee in Israel (0309-15). Centrally located, Schneider Children’s Medical Center is the only tertiary children’s hospital in Israel, treating patients from all over the country and even abroad.

The first author made three visits to Israel between January and June 2016 to interview in person adolescents and parents separately. Pediatric oncologists at Schneider assisted in re- cruiting patients who were scheduled for follow-up visits and met the study’s inclusion criteria: those currently between the ages of 12 and 19 years who were in remission for at least 2 months and had been offered FP options of sperm, ova, or ovary cryopreservation. The inclusion criteria were specifically devised so that adolescents and their parents would be past the intensity of cancer diagnosis and treatment and would have enough time to process and reflect upon their FP decision-making experiences. Patients and their parents were invited to participate in the study by their treating physician, either by phone before the scheduled follow-up visit or in person during the appointment. The first author followed up with those patients and/or parents who agreed to be interviewed to schedule a time and place to conduct the interview at the participant’s discretion—an office at Schneider, the participant’s home, or a cafe´. All participants signed Hebrew assent/consent forms. Parental consent was also obtained for any adolescent below the age of 18 years. Interviews were conducted in Hebrew on an individual basis with adolescents and separately with either one or both parents.

All interviews were digitally recorded and then translated and transcribed into English—the language understood by all co- authors. Translated transcripts were checked against the Hebrew recordings for accuracy by an independent person, fluent in both Hebrew and English. English transcripts were then thematically analyzed²⁸by the first author with the assistance of MAXQDA 12 software. In such thematic analysis, prevalent patterned re- sponses, or themes, of the interviews’ semantic content were identified in an essentialist/realist approach and organized ac- cording to the theoretical structure of the interview guide (Ap- pendices 1 and 2).* A quarter of all transcripts were read by a second author, who also reviewed and examined all thematic codes based on her readings of the full transcripts.

Results

Twenty-eight adolescents and their parent(s) were invited to participate in the study. Sixteen adolescents (Table 1) and 24 parents—14 individuals and 5 pairs (Table 2) agreed to be interviewed, collectively representing 20 cases of FP deci-

sion making (Fig. 1). (For diagnoses please refer to Table 3.) In 15 cases both the adolescent and her/his parents were interviewed. One adolescent agreed while her parents declined and four parents agreed while their children declined, could not be reached, or could not be contacted because they were unaware that FP had been discussed.^{ In total, 11 adolescents—7 males and 4 females—and 11 parents declined to be interviewed. Those who declined were not asked to clarify the reasons for their decision.

Interviews lasted between 15 and 60 minutes. Interviews with adolescents tended to be shorter than those with parents.

The article uses pseudonyms for all participants. The themes that emerged are grouped by subheading.

How the topic of FP arises

In the majority of cases adolescents and parents recall oncologists bringing up the topic of FP in discussion before treatment, though not necessarily at the time of diagnosis.

While some, like David (age 14, diagnosed 13) or Ms. Peretz, remember the oncologist raising the matter in discussion at the first meeting with them, others, like Dalia (age 16, diagnosed 15) or Ofer (age 15, diagnosed 14) recount their oncologist discussing it right before the start of treatment.

One adolescent, Irit (age 17, diagnosed 15) recalls a transplant physician bringing up the subject of FP after undergoing chemotherapy but before bone marrow transplantation.

However, her mother, Ms. Bloch, states thatsheasked about FP with the treating physician in their first meeting, during which Irit was absent. Ms. Biton, whose daughter was not present during any oncofertility discussions and did not undergo FP, recalls the oncologist bringing up the topic ap- proximately 6 months after the start of chemotherapy; she explains that due to the relatively mild treatment that her

Table1. Adolescent Demographics,N=16 Gender

Female 10

Male 6

Age

At time of interview At time of diagnosis Range: 14–19 years Range: 12–16 years Mean: 16.56 years Mean: 14.44 years Median: 17 years Median: 14.5 years Ethnicity (self identified)

Arab 1

Ashkenazi 5

Ashkenazi and Sephardic 3

Sephardic 4

Other 3

Religion (self identified)

Traditional Islam 1

Secular Judaism 7

Traditional Judaism 3

Religious Judaism 4

Orthodox Judaism 1

*As this is a qualitative study, no quantitative scale was used to analyze the themes present in the data.

{In addition to the potential 28 cases where both parents and adolescent were invited to be interviewed for this study, there were two cases where FP was discussed only with the parents. In both cases FP was not pursued for the female patient. One mother agreed to be interviewed, while the parents representing the other case declined.

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daughter received for Desmoid tumor (nodular fasciitis), the oncologist suggested that the parents consult a fertility spe- cialist only when the adolescent’s menstruation became erratic.

A few parents recall first hearing about FP from a physician who is a family friend (Ms. Levy), a gynecologist (Ms. Paz), or a nurse (Ms. Friedman). In many female cases, (3) adolescents and (9) parents recall discussing FP not only with oncologists but also gynecologists and/or fertility specialists.

Who decides on FP

Although many adolescents and parents understand the process of deciding on FP as one that is shared (between

themselves and the physician), 5 out of 16 adolescents feel that the decision is not theirs, but instead something that either their parents alone make on their behalf or in consul- tation with physicians. None of these adolescents express any distress regarding these circumstances. Parents of these adolescents explain that their adolescents had not been present during some of these oncofertility discussions. Ms. Mizrachi questions whether her son (age 14, diagnosed 12), was mature enough to make such a decision. Ms. Friedman says she did not include her daughter (age 18, diagnosed 16), for reasons of specifically not wanting to burden her. Ms. Abrami and her son, Avi (age 15, diagnosed 13), represent a unique case.

Ms. Abrami admits that although she mentions FP to Avi in passing, she does not share too much with him to avoid causing him anxiety. In contrast, Avi feels that he, alone, made the FP decision.

Unbeknownst to the adolescent, some parents feel that the physician makes the FP decision. In relating the time pressure and stress involved in this decision-making, Ms. Peretz says,

‘‘We did what we were told.’’ Mr. Barzilai reveals that due to the extensiveness of the disease their pediatric oncologist

‘‘actually, proposed and, proposed and decided’’ what FP options to take and when. In comparison with the above scenarios, Dalia (age 16, diagnosed 15) represents a different case of dissonance: although she comprehends the process of FP decision making as shared, her mother acknowledges supporting the FP decision but affirms that Dalia ultimately had ‘‘the courage to decide the final decision.’’

Factors involved in FP decision

Almost all participants—adolescents and parents, includ- ing those that did or did not undergo FP—feel comfortable with their previous FP decisions. None seem to harbor any regret. On the contrary, many have positive feelings regarding these decisions, expressing happiness and satisfaction.

Even Mr. and Ms. Levy, whose daughter, Gila (age 16, diagnosed 14), did not undergo FP, say they feel entirely alright with the decision. However, Gila, herself admits that it

FIG. 1. Adolescent FP decisions,N=20. FP, fertility preservation.

Table2. Parent Demographics,N=24 Gender

Female 18

Male 6

Age

Range: 35–56 years Mean: 47.29 years Median: 46.5 years

Education (highest level achieved)

Some high school 3

High school 10

Some college 1

College 2

University/seminar 5

Graduate school 3

Ethnicity (self identified)

Arab 1

Ashkenazi 8

Ashkenazi and Sephardic 2

Sephardic 13

Religion (self identified)

Traditional Islam 1

Secular Judaism 9

Traditional Judaism 10

Religious Judaism 4

ONCOFERTILITY DECISION MAKING 3

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stresses her a little after discussing it in the interview, but that she ‘‘didn’t really get to think about it.’’ Factors involved in decision making are explored below.

Adolescent desire for parenthood later in life. Adoles- cents’ desire to have children plays a major role in FP decision making. When asked if s/he had ever thought about being a parent before her/his diagnosis, the majority (7 females and 5 males) answer in the affirmative, with some anticipating how many children they will have and even their possible names. The desire for parenthood is so potent for some that Na’amah (age 19, diagnosed 15) refers to it as an aspiration and Avi (age 15, diagnosed 13) as ‘‘the dream.’’

Even the three males who have not given much thought to the topic prior to diagnosis express interest in becoming a parent later in life, with Ze’ev (age 18, diagnosed 16) exclaiming,

‘‘I must [have children]!’’

Physician influence. Another main factor that invariably comes up in interviews with adolescents and parents alike is the influence of the physician on FP decision making. Both parties perceive the physician as having a stance on whether to pursue FP in their case. Adolescents and parents repeatedly convey that the physician recommend that they undergo FP or that it is necessary or preferable to do it. For example, Ofer (age 15, diagnosed 14), who preserved his sperm, says, ‘‘So [the physician] told us that we need to go to freeze sperm. Eh, just in case. They don’t know if it will affect or not affect, but we need to freeze sperm.’’ Ms. Kalir, whose son (age 18, diagnosed 16) preserved his sperm, states, ‘‘[The physicians] told us that they preserve. It’s worthwhile. It’s recommended, eh.you know, to save so that he will have for the future. children.’’ In contrast Ms. Katz notes that in her daughter’s case they pursued FPdespitereading the physician’s body language of hesitancy.

Ms. Katz says, ‘‘She didn’t say it, but her body language said,

‘Like, I wouldn’t do it. [Her fertility will] be alright.’ ’’

Therefore, physicians’ explicit or implicit recommendations often factor into FP decision making, especially for parents, due to their complete trust in the medical system.

Parents repeatedly note their trust in specific physicians or medical institutions. For instance, Ms. Hadad makes the following remarks regarding physicians treating her daughter, Leena (age 17, diagnosed 13): ‘‘They know [FP] better than me’’; and ‘‘They know the situation. Like, they treat many children, not just my girl. So they know what they’re doing.’’ Furthermore, rarely do participants turn elsewhere, other than the medical team, for information on FP. Only the

Levy and Bloch families consulted with a renowned rabbi from an institute that specializes in fertility issues.

Various considerations. Parents mention a number of additional considerations that factor into their decision-making process. Two mothers note that when deciding upon which FP technique their daughters would pursue, they consider more seriously those options that provide the greatest chance of success. Hence, Ms. Tenenbaum explains choosing ova cryopreservation rather than ovary cryopreservation because the latter ‘‘would have taken a lot less time. But it’s a process that is still experimental. And still it’s impossible to know what are its chances of success. That was very obvious for me that I go with something that’s sure.’’ In deciding between ovary cryopreservation at one hospital and ovarian tissue cryopreservation that is the specialty of an expert at another hospital, Ms. Bloch rationalizes her choice in terms of ‘‘Where do I have a higher percentage of success?’’

Other considerations that come up in parental FP decision making include the adolescent’s anguish, timing between treatment and ovulation, need for anesthesia, and the diagnosed cancer stage. Mr. Peretz notes that ‘‘[j]ust the anguish that Ofer [son] faced, that’s what bothered me in all of this process.’’ Ms. Cohen says that since the timing matched between the start of treatment and her daughter’s (age 17, diagnosed 15) ovulation, they opted for her to undergo ova cryopreservation. Ms. Mizrachi says that despite fearing the FP procedure itself that required her son (age 14, diagnosed 12) to be under anesthesia for sperm retrieval and cryopreservation, they still went through with the procedure because it is worth it to try to save his sperm. In deciding between FP options for her daughter (age 18, diagnosed 16), Ms. Fried- man explains that they opted for immature rather than mature ova cryopreservation, to not postpone treatment by too much, fearing the progression of the disease.

Time pressure. Another notable factor for parents in FP decision making is the time pressure under which they have to make the FP decision or complete FP procedures, due to urgency to treat the adolescent’s cancer. Ms. Stein, whose daughter (age 16, diagnosed 14) underwent FP, states that

‘‘there wasn’t time to wait a month or 2 for there to be ovulation and then to take out eggs.’’ Ms. Levy, whose daughter (age 16, diagnosed 14) did not undergo FP, mentions that ‘‘[t]here was a feeling of urgency and that we need to do [cancer treatment].’’

In another case, Mr. Peretz, whose son (age 15, diagnosed 14) preserved his sperm, details the haste with which they had to procure the sample at home and rush it back to the hospital for cryopreservation ‘‘because you have a maximum of an hour you can come with the sperm until they freeze it.’’

Justifications for FP decisions

Many adolescents and parents feel that the decision as to whether to pursue FP is self-evident. Both parties say not much thought, consideration, or discussion is necessary. For the 18 families in this study that chose FP, it was a clear and obvious decision. Part of that has to do with understanding FP as something that needs to be done or just part of the protocol.

Many also view FP in a positive light, thinking that it is reasonable, good, or the right thing to do. Ofer (age 15, diagnosed 14) says, ‘‘And I thought it was the best thing to do. It’s also Table3. Diagnoses,N=20

Acute lymphoblastic leukemia 1

Acute myeloid leukemia 1

Burkitt lymphoma 1

Ewing sarcoma 4

Hodgkin’s lymphoma 4

Nasopharyngeal carcinoma 2

Nodular faciitis 1

Osteosarcoma 2

Retinoblastoma; osteogenic sarcoma 1

Rhabdomyosarcoma 1

Wilm’s tumor 1

Yolk sac tumor 1

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reasonable.’’ Ms. Biton believes that ‘‘it’s one of the miracles of the world that it’s possible to do such a thing.’’ Mr. Barzilai says, ‘‘there’s no apparent reason, in my opinion.not to.’’

For the Levy family, however, foregoing FP was an obvious choice for medical reasons due to an aggressive diagnosis. Mr.

Levy explains that ‘‘it was a no-brainer in a certain place because it was.there was the place where we had to start very quickly the treatments.’’ Similarly, his daughter, Gila (age 16, diagnosed 14), says, ‘‘There was no possibility to do this at all.

Because then the treatment had to start immediately.’’

Two female adolescents frame the issue of FP in terms of keeping options open—specifically that of having a child with one’s own ova. Rachel (age 16, diagnosed 14), who underwent FP says, ‘‘I wanted that like, there would always be this possibility if I’ll want.’’ Gila, who did not undergo FP admits ‘‘[t]hat it will suck that I won’t have that option. But, eh,if[with emphasis] I won’t have that option. I don’t know, if it’s correct.’’

Similarly, two mothers explain their reasoning for pursuing FP in terms of making efforts to maximize their adolescents’

future reproductive options. Ms. Mizrachi shares that she and her husband ‘‘don’t want to miss for [Idan] the opportunity that if heaven forbid really he won’t succeed to have children, that we will know that we did everything in order to give him the chance that he will have children.’’ She adds that they decide for Idan to undergo FP ‘‘so that afterwards he won’t say to us, ‘You didn’t try to do the maximum for me.’ ’’ Likewise, Ms. Te- nenbaum, whose daughter (age 17, diagnosed 16) underwent FP, maintains that ‘‘as a mother I always think that I need to leave for my children all the ways open. And all the doors open.

And I didn’t want to make this decision for her, that she be- forehand will lose this right, to be a mother from her own eggs.’’

Uncertainty regarding future use of preserved biological materials

Although the study’s inclusion criteria limited participa- tion to cases of adolescent remission, participants were asked what was discussed or decided upon with regards to cryopreserved sperm, ova, ovaries, or ovarian tissue in the case of adolescent death. None of the participants, except for Idan (age 14, diagnosed 12) who was unsure, recall any such discussion with physicians.

In leading up to this sensitive question, participants who underwent FP were asked what they discussed or thought would happen with their cryopreserved biological materials in the future. Although many adolescents admit not having discussed or thought about the topic, they persist in conjec- turing as to what will happen. For those that preserved ova or sperm, all adolescents respond that they would use them only if needed—that is, if they will not get pregnant with their partner via coitus. For women who preserved ovaries or ovarian tissue, all say that either when they will want to have children or if they will not be able to have children with the remaining ovary, the cryopreserved organ(s) or tissue will be returned to their bodies. Na’amah (age 18, diagnosed 14) muses over the possibility of donating her preserved ovaries and Inbar (age 18, diagnosed 16) does the same with regards to her preserved ova, saying, ‘‘I like thought, myself, that if I, if I won’t use [the eggs], I would be happy to donate it to someone who will need.’’ Lily (age 17, diagnosed 16) adds that she feels no obligation to use her preserved ova.

Some parents note that either little or no discussion on this topic occurs but similar to adolescents conjecture as to what might happen. The majority of parents explain that their adolescents will use preserved gametes or restore preserved ovaries or ovarian tissue only if they encounter reproductive problems. A few mothers concede to having personally pondered over what they would do with preserved gametes in the case that their use is not warranted—to destroy, donate to third parties, or save for use within the family should a sibling be infertile. However, Ms. Boaz and Ms. Dagan are uncertain as to what will happen with their sons’ preserved sperm in the future and do not speculate any further, with the latter trusting that physicians will explain to her family later, after treatment completion.

Coping with fertility status post-treatment

A number of female adolescents note waiting to discuss or take any action with regards to fertility until the topic becomes more relevant for them. For example, Lily (age 17, diagnosed 16) says, ‘‘when I will want [children], then we’ll open [the topic of fertility] anew and we’ll see how to do and what to do and what is most fitting.’’ Einav (age 18, diagnosed 14) concedes, ‘‘we didn’t really talk about [future plans for the preserved ovary] because I don’t yet [chuckles] want to have children.’’

Similarly, parents of both female and male adolescents maintain that discussion and actions regarding adolescent’s fertility is merited later when s/he has a partner and will want to have children. Additionally, some view addressing such issues already as too soon because it could induce unneces- sary stress. Ms. Abrami rhetorically asks, ‘‘Because for what to cause [Avi] now, at age 15, fears and concerns?’’ Some parents recognize that their adolescent’s reproductive system needs time to recover from the stress of cancer treatment and that medical advancements can change the calculus of decision making. Ms. Paz clarifies that while her daughter, who completed treatment, already undergoes hormone checkups,

‘‘it’s still fresh. It’s only half a year after everything, so we wait.’’ Mr. Barzilai theorizes, ‘‘It could be that the medical instruments that will be (.) the things we’ll have for assistance at the same time will be a lot better than what we’re talking about now. And I assume that this is how it will be.

For what reasons should we create havoc? Let’s concentrate on other things.’’

Despite the prevalent attitude of ‘‘crossing the river when we get to it,’’ two female adolescents and one couple indicate an interest in more immediate follow-up. Leena (age 17, diagnosed 13) requests that the interviewer pass along the message to her treating physician that she wants to receive information as to when her preserved ovary will be returned to her body. Gila (age 16, diagnosed 14) says she wants to know the results of blood tests she took pre- and post-treatment.

Mr. and Ms. Portman say they would be happy for their son (age 14, diagnosed 13) to do an additional hormonal checkup.

Discussion

Four main findings from this study establish its important contributions to research on adolescent oncofertility: (1) participants’ lack of recall of discussions and uncertainty regarding posthumous use of cryopreserved biological materials; (2) the diversity and complexity of FP decision

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making; (3) the majority of participants expressing satisfaction with FP decisions and decision-making processes; and (4) the absence of stress for participants over next steps regarding adolescent fertility. Are these findings unique to the Israeli context? Not necessarily, considering that some cor- roborate with findings from studies in other cultural contexts.

Participants’ overwhelming lack of recall of discussions and uncertainty regarding posthumous use of cryopreserved biological materials suggests either an omission of medical practice or a shortcoming of physicians in discussing this topic in a way that registers with families. It is unclear whether it is a widespread phenomenon or uniquely Israeli one due to the lack of research which specifically addresses this matter. In this study, both adolescents and parents imagine adolescent use of cryopreserved biological materials later in life should s/he encounter problems with coital reproduction. A couple of adolescent females admit contem- plation of donating their cryopreserved ova or ovaries in case they do not make use of them, while a few mothers concede to having thought about possible destruction, donation to third parties, or use within the family. Considering that (1) U.S.^29,30and European guidelines^31,32specify that the topic of posthumous use or disposition of cryopreserved gametes should be discussed with patients and their individual di- rections recorded, and (2) several cases have recently come before Israeli courts regarding the issue of posthumous assisted reproduction,^33–36it is pertinent for physicians to discuss with families (in ways that register with them) what can be done with cryopreserved biological materials in the case of adolescent death or incapacity, the adolescent completes her/

his reproductive goals via coitus, or the adolescent eventually chooses not to use them.^{

These interviews with Israeli adolescents and parents offer a glimpse of the diversity and complexity of FP decision making. It is crucial for physicians to understand these complex- ities to better support adolescents and their parents in making these decisions. First, there is the matter of who makes the decision as to whether to pursue FP. Many adolescents and parents in this study feel that all parties within the triadic medical relationship share in FP decision making—a recommended goal with adolescent oncofertility.^37,38However, some adolescents note, without resentment, their lack of in- volvement in decision making (indicative of Quinn et al.’s assertion that not all adolescent oncology patients desire au- tonomous or participatory decision making³⁹), which respective parents explain as due to adolescent’s absence in oncofertility discussions or desire to protect the adolescent.

Additionally, several adolescents seem to be unaware of parents’ deferring to treating physician’s advice with respect to FP decisions, a finding in line with other studies.^20,22Furthermore, like Ginsberg et al.’s study,⁴⁰a couple of cases indicate that the parent or adolescent believes FP decisions are made by him/her alone, while the respective party does not perceive the experience similarly.

Second, adolescents and parents mention a variety of factors in FP decision making. Two main factors for adolescents are their desire to parent and physician influence.

Although Israeli hegemonic pronatalism⁴¹ is manifest in these interviews with adolescents consistently expressing a strong desire for children, other studies suggest that adolescents have predetermined expectations for becoming future parents.^42–46Adolescents also often heed the explicit or implicit recommendations their physicians have regarding FP.

Obviously, parents do the same, especially in light of the fact that many express complete trust in the medical system and as mentioned above, some feel that physicians ultimately make FP decisions. When considering different FP options, parents also take into account a number of considerations such as chance of success, adolescent’s possible anguish while undergoing FP procedures, timing between treatment and adolescent ovulation, the necessity of using anesthesia, and adolescent’s diagnosed cancer stage. While many parents recognize that their adolescent’s condition requires urgent treatment, they repeatedly note the contextual factor of time pressure in which they have to make FP decisions.

Adolescents and parents justify their FP decisions in either one or two ways. First, both parties view their decisions as obvious largely due to their positive feelings toward FP or their perception of it as something that is necessary to do.

Israeli pronatalist attitudes, adolescents’ desire to parent, and confidence in medicine and technological advancements surely contribute to these positive feelings and the high rate of pursuing FP within this study. It is unclear whether physicians portray FP as part of treatment protocol to adolescents and their parents, that this is how families interpret oncofertility discussions, or a combination of both. To aid decision making, parents in Nieman et al.’s study recommend physicians present FP as part of their child’s treatment

‘‘package.’’²⁰For one of two cases where FP was not pursued, the parents and adolescent female also feel that their decision was self-evident, due to urgency to treat. Another, yet less frequently mentioned justification for FP decisions deals with maximizing reproductive options. The few adolescent women and mothers who allude to this demonstrate reluctance to close off the possibility to have children with one’s ova, possibly indicative of fear of future regret⁴⁶and human aversion to loss.⁴⁷

Another notable finding from this study is nearly all participants’ expressions of satisfaction with FP decisions and the decision-making processes, regardless of whether FP was pursued, a finding in contrast with that of Stein et al.²² However, one female adolescent, who did not pursue FP, admits dedicating little thought to the topic but feeling slight stress when faced with it in the interview.

Finally, adolescents and parents generally do not express stress when it comes to next steps regarding adolescent fertility. With few exceptions, both parties view fertility as only relevant later in life, when the adolescent has a partner and/or wants to have children. Some parents argue that discussing or taking further action with respect to adolescent fertility too soon is moot. Doing so could cause needless anxiety to the adolescent, reproductive systems need time to rebound from cancer treatment, and by the time the topic of fertility will be of greater relevance to the adolescent, advances in reproductive medicine could offer more possibilities. In this study, only two female adolescents and one couple desire immediate information or follow-up on current fertility status. To date, there are no other studies that empirically investigate this aspect of adolescent oncofertility.

{Another crucial task is to include text regarding plans for posthumous use/destruction of cryopreserved biological materials in FP consent forms. This aspect will be elaborated upon in a future article.

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Limitations

The qualitative nature and participant demographics of this study limit the generalizability of its findings. Due to the convenience sampling technique employed for this study’s recruitment, Israeli Arab, and Jewish orthodox perspectives are underrepresented or not present, as are cases of foregoing male FP. Additionally, findings can be indicative of participant self-selection bias. The retrospective nature of the study also introduces the potential for participant recall bias. Al- though the majority of cases represent the perspective of the adolescent and parent(s), some do not include both perspectives. Furthermore, not conducting interviews with physicians or reviewing medical records, omits a third and wholly relevant perspective in adolescent FP decision making.

Conclusion

The specific finding that suggests health professionals are either reticent in or inept at discussing posthumous use of cryopreserved materials is surprising given international guidelines and the country’s current legal climate with respect to the topic. Interviews with physicians and review of medical files are necessary to determine whether this finding is due to participant recall bias. If participant recall bias is not at issue, then further investigation is warranted to ascertain whether this is solely an Israeli phenomenon and what barriers prevent such communication from taking place.

As in other cultural contexts, Israeli adolescent oncofertility decisions are diverse and complex. Israeli society’s pronatalist stance and/or the study’s potential self-selection bias may be contributing factors to participants’ overwhelmingly favorable views of FP. Future research should focus on the decision making of those who decline FP. Although there is much overlap in the experiences of adolescents and parents with oncofertility decision making, the two parties do not necessarily view the process similarly. Adolescents and parents can differ in their perceptions of who is ultimately responsible for the FP decision. Compared to adolescents, parents mention a wider variety of factors in FP decision making. Future research could quantitatively investigate the importance of these various factors in FP decision making. Despite these differences, parallels run between adolescents and parents in their justifications for FP decisions, lack of recall regarding discussion of posthumous use of cryopreserved materials, the tendency to wait in taking further steps regarding adolescent fertility until the topic becomes more relevant, and contentment with FP decisions. Findings from this study suggest the need for similar studies to be conducted in diverse cultural contexts to develop culturally appropriate oncofertility discussion guidelines for healthcare professionals.

Acknowledgments

The authors thank Alon Steinhorn for reviewing and editing translations of the interview transcripts, as well as the Uni- versity of Basel’s Botnar Foundation for funding the study.

Author Disclosure Statement

No competing financial interests exist.

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(Appendix follows/)

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Appendix1. AdolescentInterviewGuide 1. First, I’d really like to get a picture of who you are and

your family life. How old are you?

a. Who is in your family?

2. Now, how old were you when you were told you had cancer?

a. Can you tell me a little about that time?

b. What was the diagnosis?

c. What was the treatment?

3. How did the topic of saving your ability to have children made of your own eggs/sperm first come up?

a. When in the course of your cancer journey did the topic first come up?

b. What thoughts or feelings did you have when you found out that your ability to have a child with your eggs/sperm could be affected by the cancer and/or treatment?

c. Who of the healthcare team discussed this with you?

d. What options to preserve your ability to have children made of your eggs/sperm were discussed with you?

4. Before your diagnosis, had you ever thought about being a parent?

5. If you are interested in being a parent, were you aware or told of other ways to have children?

6. What do you believe are the pros and cons of each of these other ways of having children?

7. What did you decide: did you freeze your eggs/sperm/

ovaries?

8. Did you discuss your thoughts or decision with anyone?

9. Was there any individual(s) opinion more important than others’ when making your decision?

10. Did you turn anywhere else to look for information about saving your ability to have children made of your own eggs/sperm?

11. What was your experience with your parent(s) and/or physician when coming to a decision?

12. What were some of the considerations and/or reser- vations you had about [specific type of fertility preservation method(s) offered]?

13. *[asked only in case of gamete cryopreservation] Tell me what you thought and discussed either with the physician or your parent(s) about what you would do with your frozen eggs/sperm/ovaries in the future?

a. Most childhood cancers are treatable, but physicians routinely question patients what they would want to do with their frozen eggs/sperm/ovaries in the case of death. How did you experience this?

b. Was a specific decision made?

14. What did you think about having a family or children for yourself, before cancer treatment?

a. Did your thinking change during cancer treatment?

How?

b. Did your thinking change after cancer treatment?

How?

15. When faced with the decision to save your eggs/

sperm/ovaries, how important was it for you to have children with your own eggs/sperm?

16. Have your opinions about parenting changed since you made your decision?

17. How do you feel today about the decision that was made regarding [specific type of fertility preservation method]?

18. Is there anything the healthcare team or specific members could/should have done differently to have improved your experience in making a decision whether to freeze your eggs/sperm/ovaries?

19. From today’s discussion, were there things that you had or had not thought about previous to our discussion?

20. Is there anything else that we haven’t covered that you would like to say or share with me?

Appendix2. ParentInterviewGuide

1. First, I’d really like to get a picture of who you are and your family life. What is your profession?

a. Who is in your family?

2. Now, can you tell me a little about the time you first found out your daughter/son had cancer?

a. What was the diagnosis?

b. What was the treatment?

3. How and when did the topic of fertility preservation first come up?

a. When in the cancer journey did this topic first come up?

b. What thoughts or feelings did you have when finding out your son/daughter’s fertility could be negatively impacted by the cancer and/or treatment?

c. Who of the healthcare team discussed this with you?

d. Was your child present during the discussion?

e. What options to preserve your child’s fertility were discussed with you?

4. Before the cancer diagnosis, had you ever thought about your child being a parent?

5. Were you aware or told of other reproductive/parenting options?

6. What do you believe are the pros and cons of each of these other reproductive/parenting options?

7. What did you decide: did you have your daughter’s eggs or ovaries/son’s sperm preserved?

8. Did you discuss your thoughts or decision with anyone?

9. Was there any individual(s) perspective particularly influential in your decision making?

10. Did you turn anywhere else to look for information about preserving your child’s fertility?

11. What was your experience with your son/daughter, physician, or partner [when applicable] when coming to a decision?

12. What were some of the considerations and/or reser- vations you had about [specific type of fertility preservation method(s) offered]?

13. *[asked only in case of gamete cryopreservation] Tell me what you thought and discussed either with the physician or your child about what would happen with your son/daughter’s cryopreserved sperm/eggs/

ovaries in the future?

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a. Most childhood cancers are treatable, but physicians routinely question patients what they would want to do with their frozen eggs/sperm/ovaries in the case of death. How did you experience this?

b. Was a specific decision made?

14. What did you think about your son/daughter having a family or children, before cancer treatment?

a. Did your thinking change during cancer treatment?

How?

b. Did your thinking change after cancer treatment?

How?

15. When faced with the decision to preserve your son/

daughter’s fertility, how important was it to you for your son/daughter to have genetically related children?

16. Have your opinions about parenting changed since the decision was made?

17. How do you feel today about the decision that was made regarding [specific type of fertility preservation method]?

18. Is there anything the healthcare team or specific members could/should have done differently to have improved your experience in making a fertility preservation decision for your son/daughter?

19. From today’s discussion, were there things that you had or had not thought about previous to our discussion?

20. Is there anything else that we haven’t covered that you would like to add or share with me?