Abstract
Objective
To explore decision-making experiences of women who decide not to undergo fertility preservation therapy before breast-cancer treatment.
Methods
This quantitative, descriptive study recruited women diagnosed with breast cancer who underwent the decision-making process regarding fertility preservation, ultimately deciding not to pursue fertility preservation. Participants completed a questionnaire after a routine medical examination.
Results
Of 39 participants, 18 (46.2%) wanted to have children pre-diagnosis, and 10 (25.6%) expressed this wish afterward. Twenty-four percent of women who did not undergo fertility preservation indicated that they did not have sufficient information, and 14% felt uncertain about their decision. Women who wished for children even post-diagnosis frequently expressed regret about not undergoing treatment.
Conclusions
These findings underscore the importance of providing adequate and timely information, decision-making support, and post-decisional psychological care for women facing fertility decisions following a cancer diagnosis. Developing systems to guide when and how to intervene immediately post-diagnosis is essential to promote informed reproductive decision-making and support women in managing these complex, value-laden choices.
Keywords: Breast Cancer, Fertility preservation, Decision-making, Psychological impact, Nursing practice
1. Introduction
Breast cancer is the most prevalent form of cancer among women, with an estimated 100,000 new cases diagnosed annually in Japan, including approximately 10,000 women of reproductive age [1]. Anticancer drugs and hormones administered during breast-cancer treatment significantly affect fertility, posing a major concern for patients who plan to have children or are considering starting a family in the future [2], [3], [4], [5]. To address this concern, fertility preservation therapy before cancer treatment has been promoted in Japan [6]. However, deciding whether to preserve fertility during the brief window between breast-cancer diagnosis and drug-therapy initiation is a great burden for patients [7]; owing to the limited information available on fertility preservation, they face making this decision while feeling anxious, lonely, and uncertain [8]. In addition, fertility preservation requires patients to visit a reproductive-medicine department separate from the oncology department and to undergo eligibility assessment, examinations, and procedures for preservation. Because these processes require multiple visits, they may impose temporal, physical, and psychological burdens on patients in the limited period immediately post-diagnosis and before the start of cancer treatment. This burden may be even greater in rural areas, where reproductive medicine facilities are limited; increased travel distance and repeated visits may further discourage patients from pursuing fertility preservation. Additionally, deciding whether to preserve fertility can have lifelong consequences. Women may be required not only to undergo demanding cancer treatment but also, in some cases, to reconsider and reconstruct their life plans [9]. In particular, when women who wish to have children decide against fertility preservation and continue to hope for pregnancy after cancer treatment, they may have no choice but to rely on reproductive medicine, although pregnancy is not guaranteed; the burden they face may therefore be prolonged. Thus, fertility-related problems arising after a breast-cancer diagnosis have become an urgent issue because they involve a treatment process characterized by multiple constraints and considerable uncertainty.
Women who decide to end infertility treatment in the general infertility setting are said to undergo a process of temporary grief, such as impatience, anxiety, and loss of confidence, before finally accepting their situation, moving on to setting new goals and socialization, and making the decision to end treatment. Finding meaning in choosing a life without children may help women move forward in a way that is true to themselves [10]. However, such psychological acceptance develops over a long period of several years from infertility treatment to the decision to terminate treatment. Even when life without children is ultimately chosen, the inherent circumstances are distinct owing to the compulsion to make decisions regarding childbearing within a short timeframe following a cancer diagnosis. The decision regarding fertility preservation, made in parallel with cancer-treatment choices, affects not only the difficulty of decision-making itself but also the process of reconstructing one's life during survivorship. Thus, support is crucial.
Conversely, to establish a foundation for support, a concrete understanding of how decisions are made and of the psychological state surrounding those decisions is essential. However, in Japan, fertility preservation therapy for patients with cancer is still relatively novel; few report describe the actual situation of fertility preservation decision-making among patients with breast cancer in this country [11], resulting in limited resources for establishing support. In addition, although a nationwide network for cancer treatment and reproductive medicine, together with financial support, has been introduced in Japan [12], several challenges remain, including the lack of information post-diagnosis [13], limited number of institutions able to provide fertility preservation, and concentration of reproductive medicine in urban areas. Therefore, many challenges remain regarding fertility preservation decision-making in patients with breast cancer.
Therefore, this study aimed to clarify the actual status of decision-making and support needs among women who had previously been diagnosed with breast cancer and had experienced fertility preservation-related decision-making by conducting a questionnaire survey. In this survey, the actual status of fertility preservation-related decision-making after breast-cancer diagnosis was examined from the perspective of decision-making quality and was evaluated in terms of satisfaction with information, understanding of fertility preservation, confidence in decision-making, and regret. Furthermore, because this study focused on women's decision-making regarding pregnancy and childbirth, we assumed that the desire for children at the time and the presence or absence of children would be related to the quality of decision-making, and these factors were included in the survey items. In addition, the questionnaire survey was conducted at a medical institution located in a small city in Japan, and the status of fertility preservation decision-making in a regional setting was examined. Although limited data were collected in this study because of the characteristics of reproductive-medicine provision for patients with cancer in Japan, the findings are expected to be useful for examining future decision-making support.
2. Methods
2.1. Definition of terms
2.1.1. Fertility-preservation options for women with breast cancer
This refers to the decision made by a patient with breast cancer, based on her desire to have children, regarding whether to undergo fertility preservation before starting drug therapy that may affect fertility, and, if so, which method to choose. Options for fertility preservation include egg freezing, embryo freezing, ovarian tissue freezing, and gamete donation. In Japan, the primary fertility-preservation methods chosen by women with breast cancer prior to drug therapy are embryo freezing and egg freezing, with ovarian tissue freezing currently at the research stage [6].
2.2. Participants
The study included adult female patients attending the outpatient breast surgery clinic at Yamaguchi University Hospital in a small city in Japan, which does not offer fertility preservation therapy for patients with cancer. If these patients opted for fertility preservation therapy before breast-cancer treatment, they would have had to commute 40 km to a reproductive health care facility. The selection criteria were as follows: (1) patients diagnosed with primary breast cancer after 20 years of age, (2) women who were informed about the possible infertility risks of cancer drugs prior to therapy and underwent the decision-making process regarding fertility preservation, ultimately deciding not to pursue it, and (3) women who had completed their scheduled breast-cancer treatment, were physically and mentally stable, had no metastasis or recurrence, and regularly attended follow-up appointments at the breast surgery outpatient clinic. The exclusion criteria were (1) those deemed unsuitable as patients by the treating physician and (2) those with physical or depressive symptoms due to mental disorders in their daily life. Regarding exclusion criteria related to psychiatric symptoms, participant eligibility was determined primarily based on the clinical judgment of the attending physician. Specifically, the study included patients whom the attending physician judged to be mentally stable, comprehensively considering factors such as whether they had consulted a psychiatrist, their current treatment status, and their mental stability in daily life.
2.3. Ethical considerations
The Ethics Review Committee of Yamaguchi University/Yamaguchi University Hospital approved all research plans and procedures for this study (approval number 2021–162; approval date:2022.1.26). The questionnaire was administered anonymously. Before participation, the patients were informed in writing and orally about the study outline, purpose, methods employed, expected benefits and disadvantages, compensation for health damage, options to discontinue participation in the study, handling of personal information, and storage of study data. Written informed consent was obtained from all participants. Furthermore, participants were informed that, owing to the self-administered nature of the questionnaire, they could not withdraw consent after submission or posting. All questionnaires were numbered and anonymized to ensure confidentiality.
2.4. Survey
Patients referred by outpatient breast surgeons completed a self-administered anonymous questionnaire. The survey period was from March to November 2022, and the questionnaire was given to the participants in an envelope after their outpatient consultation, either to be filled in on the spot or at home and mailed.
2.5. Study measures
The questionnaire consisted of the basic characteristics of the participants, items adapted from previous literature [14], and the Decision Regret Scale (DRS) [15], [16], [17].
2.6. Participant characteristics
Data were collected on age, type of breast-cancer treatment, presence of a husband or non-marital partner at the time of decision-making, whether the participant had children at the time of decision-making, whether she desired to have children before the breast-cancer diagnosis, and whether she desired to have children after the breast-cancer diagnosis. To mitigate the risk of identifying individuals, age at diagnosis was collected by age group.
2.7. Methods of fertility preservation decision-making
Regarding sources of information used when making decisions about fertility preservation, based on a previous study [14], participants were presented with response options—explanations from their attending physician, the internet, social networking services, television, people around them such as family members or nurses, breast-cancer survivors, books or magazines, hospital pamphlets, and friends—and were asked to select all that applied. In addition, regarding consultation partners during decision-making, participants were asked to select from the following options: husband or partner, parents, friends, and others.
2.8. Status of fertility preservation decision-making
Regarding circumstances and quality of decision-making related to fertility preservation, three original items were independently developed, with consideration given to content validity, based on previous studies on decision-making support [18], [19]. The measured items were the degree of satisfaction with the information provided (hereafter, information satisfaction), the degree of understanding of fertility preservation (hereafter, understanding of fertility preservation), and the degree of confidence in decision-making (hereafter, confidence in decision-making). The response format for each question was a 4-point scale: 4, agree, 3, somewhat agree, 2, somewhat disagree, and 1, disagree.
2.9. Regrets about fertility preservation decision
We considered it important, in examining support for women with breast cancer, to understand not only the circumstances of decision-making but also emotions experienced after the decision had been made. In particular, in Japan, where cultural norms tend to discourage overt emotional expression and emphasize interpersonal relationships [20], understanding post-decisional emotions may provide important information for the development of supportive care.
Importantly, this study does not presuppose that all women who did not undergo fertility preservation therapy before cancer pharmacotherapy experienced regret; rather, it is based on the view that emotions after decision-making are diverse and vary among individuals. Therefore, to assess subjective emotions related to decision-making, the degree of regret was measured using the Decision Regret Scale (DRS) [15], and its associations with participants' desire for children and parental status were examined.
Regret encompasses two aspects: the recognition that the choice made may not have been the optimal one, and self-blame for having made an incorrect decision. In the context of important medical decisions, self-blame may occur. Therefore, when measuring regret, care must be taken to avoid questionnaire items that might excessively evoke negative emotions related to the decision made at that time. The DRS was developed with this consideration in mind and does not include content intended to induce self-blame. The reliability of the DRS has been reported in multiple patient populations, including patients with breast cancer, with Cronbach's alpha coefficients ranging from 0.81 to 0.92. The specific items include the following five statements: (1) the decision was good; (2) the respondent regretted the decision; (3) the respondent would make the same decision again; (4) the respondent suffered great harm from the decision; and (5) the respondent considered the decision to have been wise. The respondents were instructed to indicate their level of agreement with the decision by selecting one of the following options: “strongly agree,” “agree,” “neither agree nor disagree,” “disagree,” or “strongly disagree.” The DRS was analyzed according to the University of Ottawa calculation method, with reversal items (2) and (4) scored on a 5-point scale of 0, 25, 50, 75, and 100 points. Lower scores indicate less regret. The DRS is available on the Internet, and no request for permission to use it for survey purposes is required.
2.10. Analytical methods
Descriptive statistics, excluding missing values, were used to analyze participants' background characteristics, sources of information and people consulted, satisfaction with information, understanding of fertility preservation, confidence in decision-making, and DRS scores. For comparisons of DRS scores by background characteristics, participants were divided into two groups for each variable: those who had wanted children pre-diagnosis versus those who had not; those who continued to want children post-diagnosis versus those who did not; and those who had children at the time of diagnosis versus those who did not. Comparisons between the two groups were conducted using independent samples t-tests. In addition, for items assessing satisfaction with information, understanding of fertility preservation, and confidence in decision-making, responses of “4: strongly agree” and “3: somewhat agree” were classified into the agree group, whereas responses of “2: somewhat disagree” and “1: strongly disagree” were classified into the disagree group. Differences in mean DRS scores between these two groups were also examined using independent-samples t-tests. Statistical analysis was performed using SPSS ver. 28 for Windows, with the significance level set at <5% (p < .05).
3. Results
Herein, we focused on women in Japan who made the decision not to undergo fertility preservation before breast-cancer pharmacotherapy, a group whose experiences have not been sufficiently clarified to date; we examined the actual status of their sources of information, consultation during decision-making, content of anxiety, understanding of fertility preservation, satisfaction with information, confidence in decision-making, and regret.
3.1. Demographics
A self-administered questionnaire was distributed to 42 participants, and 39 responses were collected, yielding a response rate of 92.8%. At breast-cancer diagnosis, 11 women (28.2%) were aged 30–34 years, 17 (43.6%) were aged 35–39 years, 9 (23.1%) were aged 40–44 years, and 2 (5.1%) were aged 45–49 years; no participants were in their 20s. Thirty-three women (84.6%) had a husband or partner at the time of diagnosis, and 27 (69.2%) had children. Eighteen women (46.2%) desired childbearing pre-diagnosis but this decreased to 10 (25.6%) post-diagnosis; among those who had desired childbearing pre-diagnosis, 8 no longer expressed this desire post-diagnosis (Fig. 1). Because age at diagnosis was collected by age groups to reduce the risk of identifying individuals, the exact interval between breast-cancer diagnosis and questionnaire completion was not available. Further details on participant characteristics and the situation at decision-making are summarized in Table 1.
Fig. 1.
Study flow diagram.
Table 1.
Demographic characteristics (N = 39).
| Item | N (%) | ||
|---|---|---|---|
| Age at diagnosis | 20s | 0 | (0) |
| 30–34 years | 11 | (28.2) | |
| 35–39 years | 17 | (43.6) | |
| 40–44 years | 9 | (23.1) | |
| 45–49 years | 2 | (5.1) | |
| Treatment (multiple answers) | Surgery | 39 | (100) |
| Anticancer agents | 22 | (56.4) | |
| Hormonal agents | 25 | (64.1) | |
| Molecular-targeted drugs | 4 | (10.2) | |
| Radiation | 13 | (33.3) | |
| Husband or partner at diagnosis | Yes | 33 | (84.6) |
| No | 6 | (15.4) | |
| Children at diagnosis | Yes | 27 | (69.2) |
| No | 12 | (30.8) | |
| Desire for childbearing pre-diagnosis | Yes | 18 | (46.2) |
| No | 21 | (53.8) | |
| Desire for childbearing post-diagnosis | Yes | 10 | (25.6) |
| No | 29 | (74.4) | |
| Satisfied with information about fertility preservation (N = 34) | Strongly agree | 13 | (38.2) |
| Agree | 13 | (38.2) | |
| Disagree | 7 | (20.6) | |
| Strongly disagree | 1 | (2.9) | |
| Understood and made a decision to preserve fertility (N = 35) | Strongly agree | 15 | (42.9) |
| Agree | 9 | (25.7) | |
| Disagree | 9 | (25.7) | |
| Strongly disagree | 2 | (5.7) | |
| Confidence in decision (N = 36) | Strongly agree | 24 | (66.7) |
| Agree | 7 | (19.4) | |
| Disagree | 5 | (13.9) | |
| Strongly disagree | 0 | (0) | |
3.2. Information and advisors used in decision-making
Regarding sources of information used for decision-making about fertility preservation, multiple responses were allowed; 36 of 39 participants (92.3%) responded. The most common source was physicians (21 respondents, 57.9%), followed by the internet (7 respondents, 18.4%), television and social networking services (4 respondents each, 10.5%), nurses and family members (3 respondents each, 7.9%), breast-cancer or other cancer survivors and books or magazines (2 respondents each, 5.2%), and medical staff other than physicians or nurses, hospital brochures, and friends (1 respondent each, 2.6%). Four respondents (9.6%) selected “other,” one respondent (2.6%) reported not relying on any information source, and one respondent (2.6%) provided no response (Fig. 2). Regarding consultation partners during decision-making, husbands or partners were the most common nonmedical consultants (25 respondents, 64.1%), followed by parents (11 respondents, 28.2%). Friends (2 respondents, 5.1%) and others (1 respondent, 2.6%) were less common, and 12 respondents (30.8%) did not consult anyone other than medical professionals (Fig. 3).
Fig. 2.
Sources of information for decision-making about fertility preservation after a breast cancer diagnosis.
Fig. 3.
Consultation partners other than medical professionals when making a decision about fertility preservation after a breast cancer diagnosis.
3.3. Concerns about decision-making regarding fertility preservation
The most common concern during decision-making was the disease itself (21 respondents, 53.8%), followed by future pregnancy (eight respondents, 20.5%), husband's or partner's feelings (three respondents, 7.7%), cost of preserving fertility (one respondent, 2.6%), and others (two respondents, 9.6%). Two of the “other” respondents answered, “my child's feelings” (Fig. 4).
Fig. 4.
Concerns when making a decision about fertility preservation after a breast cancer diagnosis.
3.4. Satisfaction and understanding of information on fertility preservation and confidence in decision-making
The responses from all participants were collated and analyzed in terms of their satisfaction with the information they received, understanding of reproductive medicine, and confidence in their decision-making (Fig. 5), and these were compared with whether or not they had children at breast-cancer diagnosis and whether or not they wanted to have children before and after breast-cancer diagnosis (Table 2). For items with missing values, analyses were conducted for each item using the number of valid responses as the denominator. Missing values were not imputed.
Fig. 5.
Satisfaction, understanding, and confidence in decision-making about fertility preservation after a breast cancer diagnosis.
Table 2.
Relationship between background of study participants and their situation at the time of decision-making.
| Understood fertility preservation (N = 37) |
Satisfied with the information (N = 36) |
Confidence in decision-making (N = 36) |
||||||||
|---|---|---|---|---|---|---|---|---|---|---|
| Mean | SD | P | Mean | SD | P | Mean | SD | P | ||
| All participants | 3.06 | 0.97 | 3.11 | 0.84 | 3.53 | 0.74 | ||||
| Child pre-diagnosis | Yes | 3.21 | 0.90 | 0.179 | 3.13 | 0.81 | 0.901 | 3.65 | 0.65 | 0.181 |
| No | 2.75 | 1.06 | 3.09 | 0.94 | 3.30 | 0.85 | ||||
| Desire for childbearing pre-diagnosis | Yes | 2.81 | 1.05 | 0.174 | 2.81 | 0.91 | 0.045⁎ | 3.24 | 0.90 | 0.022⁎⁎ |
| No | 3.26 | 0.87 | 3.39 | 0.70 | 3.79 | 0.42 | ||||
| Desire for childbearing post-diagnosis | Yes | 2.67 | 1.00 | 0.164 | 2.60 | 0.83 | 0.019⁎⁎ | 2.89 | 0.78 | 0.002⁎⁎⁎ |
| No | 3.19 | 0.94 | 3.33 | 0.76 | 3.74 | 0.59 | ||||
SD, standard deviation
P < .05.
P < .03.
P < .01.
3.4.1. Understanding fertility preservation
Regarding understanding of fertility preservation, 37 of 39 participants (94.9%) responded. Of these, 24 participants (64.8%) were classified into the agree group. The overall mean score was 3.06 ± 0.97. The mean score was 3.21 ± 0.90 among participants who had children and 2.75 ± 1.06 among those who did not. The mean scores were 2.81 ± 1.05 among participants who had wanted children pre-diagnosis and 3.26 ± 0.87 among those who had not and 2.67 ± 1.00 among those who continued to want children post-diagnosis and 3.19 ± 0.94 among those who did not. No significant differences were observed between the groups.
3.4.2. Satisfaction with decision-making information
Regarding satisfaction with information, 36 of 39 participants (92.3%) responded. Of these, 26 participants (72.2%) were classified into the agree group. Regarding missing information, 17 respondents (43.6%) reported the need for more information on the impact of fertility preservation on breast-cancer treatment, 9 (23.1%) reported needing more information on fertility preservation itself, and 13 (33.3%) reported needing more information on the cost of fertility preservation (Fig. 6). The mean satisfaction score was 3.11 ± 0.84. No significant difference was observed between participants who had children (3.13 ± 0.81) and those who did not (3.09 ± 0.94). The mean score was significantly lower among participants who had wanted children pre-diagnosis (2.80 ± 0.91) than among those who did not (3.39 ± 0.70; p = .045). Similarly, the mean score was significantly lower among participants who continued to want children post-diagnosis (2.60 ± 0.83) than among those who did not (3.33 ± 0.76; p = .019).
Fig. 6.
Areas of insufficient information when making a decision about fertility preservation after a breast cancer diagnosis.
3.4.3. Confidence in decision-making
Regarding confidence in decision-making, 36 of 39 participants (92.3%) responded. Of these, 31 participants (86.1%) were classified into the agree group. The mean confidence score was 3.50 ± 0.74. No significant difference was observed between participants who had children (3.65 ± 0.65) and those who did not (3.30 ± 0.85). The mean score was significantly lower among participants who had wanted children pre-diagnosis (3.24 ± 0.90) than among those who had not (3.79 ± 0.42; p = .022). Similarly, the mean score was significantly lower among participants who continued to want children post-diagnosis (2.89 ± 0.78) than among those who did not (3.74 ± 0.59; p = .002).
3.5. DRS
Most of the participants responded positively to all the items, but one participant (2.6%) responded “very much so” to item (2) (“I regret the choice”), and four participants (10.5%) responded negatively to item (3) (“If I had to do it over again, I would go for the same choice if I had to do it over again”).
No significant differences were determined in the mean scores of the DRS items (1–5) of the group with children at breast-cancer diagnosis (14.6 ± 15.34) and the group without children (20.0 ± 19.36). Additionally, no significant differences (P = .287) were observed between the mean scores of the group who wanted a child pre-diagnosis (19.7 ± 18.50) and the group who did not (13.80 ± 15.16). The mean score of the group who wanted to have a child post-diagnosis (32.2 ± 11.49) was significantly higher than that of the group who did not (11.6 ± 15.12; P < .001; Table 3).
Table 3.
Results of the Decision Regret Scale.
| 1. It was the right decision |
2. I regret the choice that was made |
3. I would go for the same choice if I had to do it over again |
4. The choice did me a lot of harm |
5. The decision was a wise one |
Average of 1–5 |
|||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Score | N | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | |
| All participants | 38 | 15.8 | 6.87 | 17.1 | 21.82 | 21.7 | 24.77 | 10.5 | 14.97 | 17.1 | 18.48 | 16.4 | 16.76 | |||||||
| Child pre-diagnosis | Yes | 25 | 13 | 14.65 | 0.08 | 17 | 23.63 | 0.484 | 20 | 23.94 | 0.281 | 9 | 14.22 | 0.195 | 14 | 16.27 | 0.077 | 14.6 | 15.34 | 0.177 |
| No | 13 | 21.15 | 20.02 | 17.3 | 18.78 | 25 | 27 | 13.46 | 16.51 | 23.08 | 21.56 | 20 | 19.36 | |||||||
| Desire to have a child pre-diagnosis | Yes | 17 | 19.1 | 18.81 | 0.280 | 23.5 | 27.2 | 0.103 | 29.41 | 28.28 | 0.085 | 7.35 | 14.7 | 0.245 | 19.12 | 20.78 | 0.553 | 19.7 | 18.5 | 0.287 |
| No | 21 | 13.1 | 15.04 | 11.9 | 15.04 | 15.48 | 20.12 | 13.1 | 15.04 | 15.48 | 16.73 | 13.81 | 15.16 | |||||||
| Desire to have a child post-diagnosis | Yes | 9 | 27.8 | 15.02 | 0.013⁎⁎ | 38.9 | 25.34 | <0.001⁎⁎⁎ | 50 | 21.65 | <0.001⁎⁎⁎ | 16.67 | 17.68 | 0.162 | 27.78 | 19.54 | 0.046 | 32.2 | 11.49 | <0.001⁎⁎⁎ |
| No | 29 | 12.1 | 15.84 | 10.3 | 15.69 | 12.9 | 18.44 | 8.6 | 13.81 | 13.8 | 17.14 | 11.6 | 15.12 | |||||||
SD, standard deviation
P < .03.
P < .01.
3.5.1. Relationship between the DRS and situation at decision-making
Regarding the relationship between the situation at the time of decision-making and DRS scores, the disagree group scored significantly higher on DRS item (4) (“The choice did me a lot of harm”) than the agree group on the understanding of fertility preservation (p = .015). No difference was detected in the DRS scores between the agree and disagree groups for satisfaction with information. Regarding confidence in decision-making, the disagree group scored higher on DRS item (1) (“It was the right decision”) than the agree group (p = .026); mean scores for all DRS items were higher (Table 4).
Table 4.
Relationship between regret and the situation at the time of making a decision (comparison between agree and disagree groups).
| 1. It was the right decision |
2. I regret the choice that was made |
3.I would go for the same choice if I had to do it over again |
4. The choice did me a lot of harm |
5. The decision was a wise one |
Average of 1–5 |
|||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Score | N | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | Mean | SD | P | |
| Understood fertility preservation | Agree | 24 | 13.54 | 14.7 | 0.245 | 15.63 | 23.09 | 0.548 | 18.75 | 22.42 | 0.238 | 6.25 | 11.06 | 0.015⁎⁎ | 15.63 | 17.77 | 0.468 | 13.96 | 13.99 | 0.182 |
| Disagree | 11 | 20.45 | 18.77 | 18.76 | 20.45 | 29.55 | 19.19 | 18.18 | 16.17 | 20.45 | 18.77 | 21.82 | 19.4 | |||||||
| Satisfied with the information | Agree | 26 | 16.35 | 14.04 | 0.877 | 14.42 | 14.45 | 0.262 | 21.15 | 23.12 | 0.308 | 9.62 | 12.4 | 0.443 | 18.27 | 16.67 | 0.958 | 15.96 | 13.79 | 0.471 |
| Disagree | 7 | 17.86 | 22.04 | 32.14 | 37.4 | 32.14 | 31.34 | 14.29 | 19.67 | 17.86 | 23.78 | 22.86 | 22.89 | |||||||
| Confident in decision- making | Agree | 31 | 12.9 | 14.25 | 0.026⁎⁎ | 14.52 | 21.19 | 0.138 | 18.55 | 23.25 | 0.071 | 8.06 | 11.88 | 0.071 | 14.52 | 16.8 | 0.073 | 13.71 | 14.2 | 0.033⁎ |
| Disagree | 5 | 30 | 20.92 | 30 | 20.92 | 40 | 28.5 | 20 | 20.92 | 30 | 20.92 | 30 | 21.21 | |||||||
SD, standard deviation
The “Agree” group comprised responses of “agree” and “somewhat agree,” and the “Disagree” group comprised responses of “disagree” and “somewhat disagree.”
P < .05.
P < .03.
4. Discussion and conclusions
4.1. Discussion
4.1.1. Difficulties in decision-making
Among study participants, fewer women with breast cancer expressed a desire to have children post-diagnosis than pre-diagnosis. Even women who had initially wanted children ultimately decided not to undergo fertility preservation therapy. Thewes et al. reported that, among younger women with breast cancer, the diagnosis itself can lead to strong anxiety regarding future family planning and the abandonment of childbearing intentions [21]. In the period immediately following a breast-cancer diagnosis, priorities regarding treatment, anxiety about prognosis, and uncertainty regarding future fertility are reported to overlap, making childbearing intentions particularly vulnerable to change. In a previous interview study, psychological factors such as fear of cancer recurrence were identified as reasons for giving up fertility preservation [9]. Similarly, the findings herein support the view that a breast-cancer diagnosis has a substantial impact on women's desire to have children. In other words, the decline in childbearing intentions observed in this study should be understood not simply as a result of insufficient knowledge about fertility preservation but also as a change associated with the psychological burden of a breast-cancer diagnosis and the need to reconstruct future life plans.
Regarding the circumstances surrounding decision-making, some patients made decisions before they were fully prepared in terms of their understanding of fertility preservation, satisfaction with the information provided, and confidence in decision-making. This finding is consistent with that of a previous study [14], which reported that patients with cancer are often forced to make decisions while feeling isolated and without obtaining sufficient information or understanding. In addition, decision-making regarding fertility preservation has been reported to be prone to decisional conflict because patients must simultaneously consider future reproductive potential, prioritization of cancer treatment, financial burden, and relationships with husbands or partners and family members within a limited period [22]. These findings suggest that decision-making regarding fertility preservation is multifaceted and complex. In the present study, 28% participants gave negative responses regarding satisfaction with information, suggesting that insufficient information affected their understanding of fertility preservation and their confidence in decision-making. In addition, 12 participants (30.1%) reported that they had consulted no one other than medical professionals, which is consistent with the finding of a previous study [14] that fertility-related issues tend to be borne alone. However, items related to satisfaction with information, understanding of fertility preservation, and confidence in decision-making were developed specifically for this study with reference to previous research and were not standardized measures. Therefore, comparison with general reference values is limited. Taken together, these findings indicate that decision-making regarding fertility preservation is multifaceted and complex.
Regarding decision-making support for fertility preservation, since the first live birth worldwide resulting from fertility preservation treatment in a patient with cancer was reported in 2004 [23], organizations related to oncofertility have expanded globally, including the International Society for Fertility Preservation (ISFP) [24]. In the USA, the Oncofertility Consortium functions as an inter-university network and, in Germany, the FertiPROTEKT network has been established in collaboration with neighboring countries such as Austria and Switzerland [25], providing patients with cancer with information and counseling on fertility preservation. In 2018, the clinical practice guidelines of the American Society of Clinical Oncology (ASCO) recommended decision-making support through medical collaboration and emphasized the importance of support for fertility preservation within such collaborative systems. However, the proportion of patients receiving care from reproductive specialists did not increase thereafter [26], highlighting challenges in the operation of the healthcare system. Similarly, in Japan, disparities in the provision of counseling by reproductive specialists to patients with breast cancer have been reported [13]; the findings of the present study may reflect this situation.
During the period between breast-cancer diagnosis and the decision of whether to pursue fertility preservation, general nurses are involved in many aspects of patient care. However, although they recognize the need for counseling related to reproductive medicine, they are reportedly forced to prioritize cancer care over support for fertility preservation because of time constraints [27]. In Japan, collaborative networks for cancer and reproductive medicine have been established nationwide, and a new government subsidy program was launched in 2021. In addition, certification systems for certified nurses, certified nurse specialists, and certified cancer and reproductive navigators have been introduced, raising expectations for patient support by qualified professionals. Concurrently, however, unclear role boundaries among healthcare professionals have been identified as barriers to effective collaboration within networks that are essential for providing breast-cancer treatment and reproductive medicine in parallel [13]. Specifically, these barriers include an insufficient mutual understanding of roles between oncologists and reproductive specialists, which may prevent referral to reproductive medicine, and inadequate multidisciplinary collaboration, which may hinder appropriate intervention for mental health issues [28]. Thus, even when specialized healthcare professionals are available, patients may fail to receive adequate support unless the roles of each profession within the healthcare team are clearly recognized and their expertise is appropriately utilized. Nurses, who interact directly with patients, are well positioned to provide comprehensive support ranging from information on fertility preservation to psychological care and are expected to play an active role as navigators. Because issues related to pregnancy and childbirth are highly individual and often difficult for women to discuss with others, it is necessary to establish a system that enables patient support through smooth medical collaboration so that such concerns are not borne alone. Within this system, nurses are expected to play a central role.
4.1.2. Decision status and regret among women who did not undergo fertility preservation
In the present survey, satisfaction with decision-making, confidence in decision-making, and regret were associated with whether participants had desired children pre- and post-diagnosis, whereas they were not associated with whether participants had children at the time of diagnosis. Concerning satisfaction with fertility preservation information and confidence in decision-making, participants who wanted children both before and after breast-cancer diagnosis scored lower than those who did not, indicating that they were not satisfied with the information and made decisions without certainty. Even when there is a desire to have a baby, the process of deciding on fertility preservation is likely to be fraught with conflicts [29]. In particular, the fear of recurrence, uncertainty about pregnancy and birth success rates, and costs tend to be confusing and psychologically draining [26]. With the development of cancer treatment, information on fertility preservation for patients with cancer is increasing, and much information can be obtained from books, mass media, and the internet. However, it is difficult to gather information on breast cancer and fertility preservation because of information overload and time constraints, and patients tend to make decisions without fully comprehending the available information [14]. Additionally, no uniform awareness exists among healthcare providers regarding the provision of information on fertility preservation, leaving some aspects to the discretion of the patient [30]. Prior experience and valid reasons are prerequisites for decision-making [16]; however, due to the rarity of experiences or lack of confirmatory data, such as those related to fertility preservation in patients with breast cancer, visualizing the decision can be difficult, resulting in ambiguity. Therefore, rather than leaving the decision-making process to the patient, providers should guide the decision-making process by providing as much evidence and information as possible while considering the patient's pace and level of understanding.
In addition, psychological care after making a decision is crucial. Personal values, which serve to guide the opinions and actions of individuals [31], are internal and, therefore, are rarely observed from outside or verbalized. Therefore, in decision-making, even if a decision is changed, it cannot be considered a change in values but only a change in value priorities. Notably, a decision not to preserve fertility after a breast-cancer diagnosis does not mean that the woman no longer wants to have a child but rather that she may prioritize cancer treatment. Additionally, some participants live several years after making their decisions, during which they may come to have regrets. As the decision-making process has been shown to affect self-care later in life, leading to poorer health outcomes and quality of life [32], it is important to support patients in their decision-making processes by taking a long-term perspective on their lives.
4.1.3. Regional disparities in decision-making support
In this study, about half of the women who wanted to have children pre-diagnosis lost that desire post-diagnosis; the 10 women who continued to want children post-diagnosis did not proceed to fertility preservation. This may be because public financial support for fertility preservation had not yet been established at that time, and patients had to consider the high costs associated with reproductive medical care. In addition, because fertility preservation could not be completed within the study institution, patients were required to visit a separate reproductive-medicine facility, resulting in additional burdens related to travel distance and appointment coordination during the limited period before treatment initiation. To reduce such regional disparities in medical care, the use of telemedicine has recently been reported and has been shown to increase patients' willingness to seek infertility treatment, improve quality of life, and increase acceptance of infertility treatment [33]. To overcome regional disparities in fertility preservation before breast-cancer treatment, new approaches to develop and utilize limited medical resources are needed.
4.2. Innovation
Reports on actual circumstances of fertility preservation decision-making among women with breast cancer in Japan, particularly those focusing on women who chose not to undergo fertility preservation, have been limited. Thus, the novelty of this study lies in the clarification of psychological and informational challenges encountered by women diagnosed with breast cancer in Japan in the context of fertility preservation decision-making. It provides insights into characteristics of decision-making in Japanese regional medical settings, where medical resources and systems for information provision differ from those in Western medical settings. Whereas previous research has often focused on technical aspects of fertility treatments or has tended to be biased toward women who chose fertility preservation, this study highlights values and emotions of women who chose not to undergo fertility preservation. It also provides insights into the relationship between circumstances at the time of decision-making and subsequent regret, illustrating the decision-making process over time. This study showed that, particularly among women who desired to have children, satisfaction with information and confidence in decision-making were low, whereas regret after decision-making was high, providing useful insights for identifying target populations for decision-making support.
By demonstrating the need for support based on regional characteristics and individual values, this study offers practical guidance for healthcare providers to establish early, interactive support systems. Specifically, opportunities for information provision and consultation regarding fertility preservation should be made available from an early stage after breast-cancer diagnosis, and continuous support should be provided while confirming the patients' level of understanding and confidence in decision-making. In addition, to realize such support, it is necessary to establish a support system wherein oncologists, nurses, and healthcare professionals involved in reproductive medicine collaborate, with clearly defined roles for each profession in information provision, psychological support, and referral to specialized institutions. This perspective represents an important step toward improving patient-centered care in cancer medicine.
4.3. Study limitations
This study was conducted at a single facility, and the data obtained are limited. In addition, the information was obtained from women who made their decisions before the start of the financial support program for fertility preservation; therefore, their decisions were made under more onerous circumstances than those at present. Furthermore, in the area surveyed, the number of cases of fertility preservation after breast-cancer diagnosis was low, at 2–3 cases annually; thus, it was difficult to ascertain the actual situation of decision-making in cases where fertility preservation was implemented, precluding a comparison between patients who did and did not undergo fertility preservation. In the future, it will be necessary to recruit more subjects and conduct a study from a broader perspective.
4.4. Conclusions
A questionnaire survey was carried out among women diagnosed with breast cancer who chose not to undergo fertility preservation therapy. The results showed that some had made their decision without fully understanding fertility preservation therapy and that they lacked confidence in their decision due to dissatisfaction with the information provided at the time of decision-making. Some women experienced long-term regret regarding their decision. This suggests that there is a lack of information and support prior to decision-making. For women, future pregnancy and childbirth are major events, and it is important to consider them in the context of personal values. It is necessary to develop specific support systems to guide when and how to intervene in the period immediately after a breast cancer diagnosis, particularly regarding reproductive decision-making.
CRediT authorship contribution statement
Keiko Kamitani: Writing – review & editing, Writing – original draft, Validation, Supervision, Resources, Project administration, Methodology, Investigation, Funding acquisition, Formal analysis, Data curation, Conceptualization. Noriko Maeda: Writing – review & editing, Methodology, Investigation. Misae Ito: Writing – review & editing, Methodology, Conceptualization.
Funding
The Japan Society for the Promotion of Science (JSPS KAKENHI) supported this research [grant number JP21K10684]. This funding organization covered all expenses related to the research, including compensation for research participants and survey costs. The funding organization was not involved in any of the following: planning the research; collecting, analyzing, or interpreting the data; writing the paper; or the decision to publish the results.
Declaration of competing interest
The authors do not have any conflicts of interest to declare.
Acknowledgment
We would like to express our sincerest gratitude to all the study participants who provided us with invaluable assistance.
Glossary
- Fertility preservation
Reproductive medicine specialty aimed at maintaining reproductive function prior to cancer treatment, which includes freezing of fertilized eggs, unfertilized eggs, and ovarian tissue.
Contributor Information
Keiko Kamitani, Email: k.kamitani.aa@nnmc.ac.jp, kamitani@yamaguchi-u.ac.jp.
Noriko Maeda, Email: nsampei@yamaguchi-u.ac.jp.
Misae Ito, Email: m-ito@yamaguchi-u.ac.jp.
Data availability
The data utilized and examined in the present study can be obtained from the corresponding author upon request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data utilized and examined in the present study can be obtained from the corresponding author upon request.