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Journal of Clinical Oncology, Vol 23, No 22 (August 1), 2005: pp. 5155-5165
© 2005 American Society of Clinical Oncology.
DOI: 10.1200/JCO.2005.07.773

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Fertility- and Menopause-Related Information Needs of Younger Women With a Diagnosis of Early Breast Cancer

B. Thewes, B. Meiser, A. Taylor, K.A. Phillips, S. Pendlebury, A. Capp, D. Dalley, D. Goldstein, R. Baber, M.L. Friedlander

From the Department of Medical Oncology, Prince of Wales Hospital, Randwick; Department of Psychology, Macquarie University; Department of Radiation Oncology, Royal Prince Alfred Hospital; Department of Medical Oncology, St Vincent's Hospital; Australia Department of Obstetrics and Gynaecology, Royal North Shore Hospital, Sydney; Department of Hematology and Medical Oncology, Peter MacCallum Cancer Centre, Melbourne; and Illawarra Cancer Care Centre, Wollongong Hospital, Wollongong, Australia

Address reprint requests to Belinda Thewes, Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales 2031, Australia; e-mail: b.thewes{at}unsw.edu.au


    ABSTRACT
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
PURPOSE: The use of chemotherapy and endocrine therapies in the treatment of premenopausal women carries with it reproductive and gynecologic implications that young women may find distressing and discordant with plans for childbearing. This multicenter study aimed to investigate fertility- and menopause-related information needs among young women with a diagnosis of early-stage breast cancer.

PATIENTS AND METHODS: Two hundred twenty-eight women with a diagnosis of early-stage breast cancer who were aged 40 years or younger at diagnosis and who were 6 to 60 months after diagnosis were entered onto the trial. Participants completed a mailed self-report questionnaire that included a purposely designed fertility- and menopause-related information needs survey and standardized measures of distress, anxiety, quality of life, menopausal symptoms, and information-seeking style.

RESULTS: Seventy-one percent of participants discussed fertility-related issues with a health professional as part of their breast cancer treatment, and 86% discussed menopause-related issues. Consultation with a fertility or menopause specialist was the most preferred method of obtaining this information. Receiving fertility-related information was rated as being significantly more important than receiving menopause-related information at time of diagnosis (P < .001) and at treatment decision making (P = .058). Receiving menopause-related information was rated as being significantly more important than receiving fertility-related information during adjuvant treatment (P < .05), at completion of adjuvant treatment (P < .001), and during follow-up (P < .001). Common questions, sources of information, and correlates of perceived importance were identified.

CONCLUSION: The results of this study suggest that younger women have unmet needs for fertility- and menopause-related information and provide preliminary empirical data to guide the development of better fertility- and menopause-related patient education materials for younger women with a diagnosis of early breast cancer.


    INTRODUCTION
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Each year, approximately 10,000 women are diagnosed with breast cancer in Australia. Approximately 27% of these women are premenopausal at diagnosis, and 6% to 7% are less than 40 years of age at the time of their diagnosis.1,2 In the United States, approximately 12,600 women aged 40 years or younger are diagnosed with breast cancer each year.3

All patients who are faced with decisions about treatment for cancer need to weigh the benefits and side effects of treatment. Compared with postmenopausal women, premenopausal women with breast cancer considering adjuvant therapies may need to consider additional potential side effects. Chemotherapy causes direct toxicity to the ovaries and may cause either temporary amenorrhea or early menopause.4-8 Rates of amenorrhea for individual chemotherapy regimes vary according to the chemotherapeutic agents used and a woman's age at the time of her treatment.9,10 Menses and ovulation may continue during treatment with tamoxifen, and ovarian suppression induced by goserelin is potentially reversible. For those who might regain fertility after treatment, there is a need to delay childbearing during treatment with tamoxifen and/or goserelin.6,11,12 Surgical oophorectomy, which causes a rapid and permanent cessation of menses, is a treatment option for some premenopausal breast cancer patients with hormone receptor–positive disease.13

The experience of an early menopause is associated with a loss of childbearing capacity and may be accompanied by hot flashes, vaginal dryness, sexual dysfunction, and prolonged exposure to the risks associated with menopause, including cardiovascular disease, osteoporosis, genitourinary problems, weight gain, psychological distress, and possibly cognitive impairment.6,11,12,14 There is some evidence that the symptoms of a treatment-induced early menopause may be experienced as more debilitating than those associated with a natural menopause because of a more rapid decline in estrogen levels.4 Furthermore, some women may experience psychological side effects of an early menopause, which may include a sense of loss and/or isolation from one's peers or feeling cheated by one's body.15

More women are delaying childbearing for personal, educational, or professional reasons,16 and breast cancer in women who are childless at diagnosis is becoming more common. Pregnancy after a diagnosis of breast cancer is an option for some women who survive the breast cancer and remain fertile. Currently, the best available evidence suggests that pregnancy after breast cancer does not increase a woman's risk of developing a recurrence following a diagnosis of early breast cancer, and it may even confer a protective effect.17,18 Recent advances in assisted reproductive technologies (ARTs) may help women who experience infertility problems as a consequence of their adjuvant treatment to have children after a diagnosis of breast cancer.7,19,20 However, there is often pressure for patients to make decisions about the use of ARTs quickly to minimize any possible delay to adjuvant therapy. In light of these factors, adequately informing and educating premenopausal breast cancer patients in a timely fashion about the potential of premature menopause and infertility after treatment for breast cancer is becoming increasingly important.

Many studies have reported that breast cancer patients require more information than their doctors provide21 and that information needs are one of the greatest areas of unmet psychosocial need for cancer patients.22,23 In general, patients who are better informed experience greater emotional, social, and physical well-being.24 They also report greater compliance25 with treatment and better clinical outcomes,26 quality of life,24 and satisfaction with care.27 Compared with older breast cancer patients, younger breast cancer patients have been found to prefer greater involvement in treatment decision making, and their needs for information may differ.28

Although numerous studies have researched the general information needs of cancer patients and survivors, few studies have specifically examined information needs in relation to reproductive issues. Only one previous study has specifically examined the fertility-related information needs of premenopausal women treated for breast cancer. This Web-based survey of 657 survivors of stage 0 to III breast cancer who were members of an internet-based survivors group found that greater concern about fertility issues was related to a desire for children at time of diagnosis, number of prior pregnancies, and prior difficulty conceiving.29 Twenty-nine percent of women in this study said that fertility issues influenced their treatment decision making, and 51% reported that their fertility-related information needs were adequately met. However, this sample included a self-selected group of participants, and the response rate to this survey was low (38%).29 Therefore, it is unclear to what extent their findings are representative of the needs of younger breast cancer patients more generally.

The present study aimed to quantitatively explore fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. To provide some exploratory data on these issues, we recently undertook a qualitative study to describe the fertility- and menopause-related information needs of 24 young women with early-stage breast cancer.30 On the basis of the results of the preliminary qualitative study, it was hypothesized that (1) fertility-related information would be rated as more important at the time of treatment decision making, and menopause-related information would be rated as more important at the end of treatment and (2) higher perceived importance of fertility- and menopause-related information would be associated with younger age at diagnosis, having plans for childbearing at time of diagnosis, no children at diagnosis, better prognosis, higher levels of menopausal symptoms, adjuvant endocrine therapy, lower quality of life, and higher levels of distress.


    PATIENTS AND METHODS
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Patients
Participants for this study were recruited through 12 urban and seven rural oncology clinics in three Australian states. Consecutive patients who met the eligibility criteria for this study were identified by searching the institutional databases. Women diagnosed with early-stage breast cancer who were aged 18 to 40 years at the time of diagnosis and who had been diagnosed 6 months to a maximum of 5 years previously were invited to participate in the study. To be eligible, participants also needed to have been treated with adjuvant systemic therapies involving either chemotherapy and/or endocrine therapies (plus or minus radiotherapy). For the purposes of this study, endocrine therapy was defined as tamoxifen, goserelin, or surgical oophorectomy. Women were excluded from the study if they had metastatic disease, were unable to give informed consent, or were not literate in English.

Procedure
Ethical approval for this study was obtained from the participating hospital and university human ethics review committees. An introductory letter and a detailed information sheet were sent by the treating medical or radiation oncologists to women eligible to participate. Women who did not wish to be telephoned had the option of leaving a message on a free-of-charge telephone number indicating their wish to decline participation. Ten to 14 days after posting invitation letters, women were telephoned by a member of the research team to answer any questions about the study, including issues of informed consent, and to determine their interest in participating. The questionnaire package, consent form, and a reply prepaid envelope were mailed out from a central research office. Reminder calls were made as required.

Measures
Data were collected on age at diagnosis, marital status, parity, attitudes towards childbearing, educational level, current menopausal status, time since diagnosis, and details of treatment. The following clinical information was gathered from participants' medical records: date of diagnosis, nodal status, stage, tumor grade, menopausal status at diagnosis, and type of surgery and/or treatment. On the basis of the results of our qualitative study, the research team developed a questionnaire, which included items in the following domains.

Format and sources of fertility- and menopause-related information received. Eight items were included to assess whether participants had received fertility- and menopause-related information, the sources of information, whether the patient or health professional had initiated fertility- and menopause-related discussions, and what format (if any) the information given was provided in.

Perceived importance of fertility- and menopause-related information. One item each asked participants to rate the current perceived importance of receiving fertility- and menopause-related information on a 5-point Likert scale ranging from 1 (not at all important) to 5 (extremely important).

Fertility- and menopause-related questions. Fourteen common fertility-related and 11 common menopause-related questions were identified based on the results of the preliminary qualitative study. In response to each of these common questions, participants were asked to indicate the following: (1) I never had this question because it was not relevant to my situation; (2) I had this question but it was answered for me; or (3) I still have this question, it has not yet been answered.

Preferred timing of fertility- and menopause-related information. Participants were asked to rate the perceived importance of receiving fertility-related and menopause-related information at five different time points across the treatment continuum (time of diagnosis, time of treatment decision making, during adjuvant treatment, at completion of adjuvant treatment, and during follow-up care) on a 6-point Likert scale ranging from 0 (not at all important) to 5 (extremely important).

Preferred format of fertility- and menopause-related information. Participants were presented with nine commonly used patient education materials or communication strategies and a standard definition. Participants were then asked to rank how useful they believed each strategy or education material would be (or would have been) in their situation (1 = most useful, and 9 = least useful).

Preferences for general information and involvement in decision making. The amount of information that participants expected and their preferred level of involvement in treatment decision making was assessed using an item adapted from the Cassileth Information Styles Questionnaire.31 In this item, participants were asked to rate the amount of information they preferred on a 5-point Likert scale ranging from 1 (as little as possible) to 5 (as much as possible).

Hospital Anxiety and Depression Scale (HADS). The HADS is a 14-item self-report measure that includes seven items each assessing depression and anxiety symptoms.32 Respondents are asked to rate the presence of symptoms on a 4-point scale. The HADS is widely used and has been found to have stable factor structure,33 high internal consistency, and good sensitivity and specificity in oncology settings.34,35

Spielberger State Anxiety Inventory–Short Form. The Spielberger State Anxiety Inventory–Short Form is a brief six-item measure of state or situational anxiety that has demonstrated reliability and validity.36

The Greene Climacteric Scale (GCS). The GCS is a 21-item menopausal symptom rating scale. The GCS is comprised of core menopausal symptoms identified by reviewing the findings of seven factor-analytic studies. The scale has good reliability and validity37 and has been widely used in studies of menopausal women. Participants are asked to indicate the extent to which they are currently bothered by each menopausal symptom. Each symptom is scored on a 4-point scale ranging from 0 (not at all) to 3 (extremely).

Functional Assessment of Cancer Therapy–Breast (FACT-B), Version 3. The FACT-B is a 44-item validated and widely used breast cancer–specific multidimensional quality-of-life measure. It includes physical, social, emotional, and functional well-being, relationship with doctor, and breast cancer concern subscales. Participants endorse the presence of symptoms using a 5-point Likert scale ranging from 0 (not at all) to 4 (very much). Higher scores indicate better quality of life. The FACT-B has good psychometric properties38 and is widely used in clinical trials.39

Statistical Analyses
The data were initially explored using descriptive statistics and graphs. The distribution of variables relating to the perceived importance of fertility- and menopause-related information at different time points was skewed. Therefore, Friedman tests were initially used to explore whether there were overall differences between means at the selected time points. This was followed by a series of Wilcoxon tests, which compared perceived importance of fertility- versus menopause-related information at each time point. A second set of Wilcoxon tests compared the highest mean importance rating with all other time points for fertility-related information and menopause-related information. For the analyses of correlates of current perceived importance of fertility- and menopause-related information, associations between age, time since diagnosis, menopausal symptoms, quality of life, measures of distress, information preference style, stage, nodal status, type of adjuvant therapy, attitudes towards childbearing, number of children at diagnosis, and educational level, on the one hand, and perceived importance of fertility- and menopause-related information, on the other hand, were explored in two separate sets of bivariate tests. Because of the skewed distribution of the perceived importance of fertility- and menopause-related information variables, nonparametric tests, including Spearman's correlation coefficients and Mann-Whitney U tests, were used for continuous predictor variables and dichotomous predictor variables, respectively. As anticipated, there were significant correlations between independent variables; therefore, an ordinal logistic regression analysis was carried out to explore whether significant correlates made a unique contribution to the variance of the dependent variable in the presence of all other variables. According to methods described by Hosmer and Lemeshow,40 all variables that met a significance criterion of P ≤ .25 in bivariate tests were entered into a full ordinal logistic regression model. Parity at diagnosis, stage of disease, and having endocrine therapy were entered as control variables in all full ordinal regression models. Independent variables or control variables with the highest P value (least significance) were then extracted from the model one variable at a time in subsequent models until a final model was constructed that contained only those variables that maintained a P ≤ .05 in the presence of other remaining variables. Because this study was exploratory in nature and a priori there were no quantitative data available to support the selection of control variables, the same criteria for removal from ordinal logistic regression models were applied to both control variables and other independent variables entered into the initial model.


    RESULTS
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Participation Rate
Three hundred fifteen women met the eligibility criteria. Forty women could not to be contacted because of out of date contact details, 25 women refused participation, and 32 women initially consented to participate but did not return a questionnaire or chose to withdraw from the study. When volunteered by the participant, reasons for nonparticipation were recorded, and the reasons included being too busy, finding fertility too much of an emotional issue to think about, and having experienced other recent cancer-related life events (eg, death of parent from cancer). The final sample consisted of 228 participants. Excluding those women who could not be contacted, a total of 275 women were approached to be in the study, and the overall participation rate was 83%.

Demographic and Clinical Characteristics
Demographic and clinical characteristics data of the sample are listed in Table 1. The mean age of the sample at diagnosis was 35.3 years (range, 20 to 40 years; standard deviation, 4.0 years). Approximately three quarters of the women (78.9%) were married or in de facto relationships at diagnosis. More than half the sample had post–senior high school education (65.8%) compared with 37% of women in the general Australian population.41 Approximately one third of the patients (31.6%) had no children at the time of their diagnosis. Most participants (57.5%) had node-negative disease, and the majority was treated with chemotherapy (87.7%). More than half of the sample received adjuvant tamoxifen (52.2%), and a small proportion received adjuvant goserelin (16.7%).


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Table 1. Demographic and Clinical Characteristics of the Sample (N = 228)

 
Preferences for Timing of Fertility- and Menopause-Related Information
Figure 1 shows the mean perceived importance rating of receiving fertility- and menopause-related information at five different time points along the treatment continuum. Because all mean values lay in the upper half of the scale, the results suggest that participants believe receiving fertility- and menopause-related information is important across the treatment continuum. Initial tests exploring the overall distribution of perceived importance of fertility- and menopause-related information suggested that there were significant differences within the fertility-related distribution (Friedman {chi} = 227.0, P < .001) and within the menopause-related distribution ({chi} = 104.63, P < .001). As we had hypothesized, receiving fertility-related information was rated as significantly more important than receiving menopause-related information at time of diagnosis (Wilcoxon z score = –4.438, P < .001) and at treatment decision making (z = –1.894, P = .058). Receiving menopause-related information was rated as significantly more important than receiving fertility-related information at the following remaining time points: during adjuvant treatment (z = –1.967, P = .049), at completion of adjuvant treatment (z = –3.387, P < .001), and during follow-up (z = –3.387, P < .001). Receiving fertility-related information was perceived as significantly more important at time of treatment decision making compared with time of diagnosis (z = –6.470, P < .001), during treatment (z = –7.305, P < .001), and at the end of treatment (z = –2.141, P = .032), but there were no significant differences between perceived importance ratings for fertility-related information at time of treatment decision making and follow-up (z = –0.195, P = .845), suggesting that fertility-related information should be introduced at the time of treatment decision making but be revisited in follow-up. Receiving menopause-related information was perceived as significantly more important at time of follow-up compared with time of diagnosis (z = –9.690, P < .001), time of treatment decision making (z = –5.278, P < .001), during treatment (z = –7.220, P < .001), and at the end of treatment (z = –2.141, P = .032).



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Fig 1. Preferences for timing of fertility- and menopause-related information (N = 228). (*) Likert scale: 0 = not at all important to 5 = extremely important. Rx, treatment.

 
Prevalence of Fertility- and Menopause-Related Questions
Table 2 lists the top 10 most prevalent fertility-related questions and the top 10 most prevalent menopause-related questions. Additional data are available (upon request) on the proportion of respondents who reported questions as "not relevant to my situation."


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Table 2. Top 10 Most Common Fertility- and Menopause-Related Questions

 
Sources of Fertility- and Menopause-Related Information
Seventy-one percent of the sample reported that they had discussed fertility-related issues with a health professional as part of their breast cancer care. Of those who had discussed fertility, 45% of women said that they had initiated these discussion themselves, 54% said that a health professional had initiated these discussions, and 1% could not recall who initiated the discussion. A slightly higher proportion of the overall sample (85.5%) said that they had discussed menopause-related issues with a health professional as part of their breast cancer care. Of those who had discussed menopause, 37% said that they had initiated these discussion, 60% said that a health professional had initiated these discussions, and 3% could not recall who initiated the discussion. Women who discussed fertility- and menopause-related information with health professionals reported that the most common source of fertility- and menopause-related information was from medical oncologists. However, the results of this study suggest that women consult a wide variety of health professionals to gather fertility- and menopause-related information. Table 3 lists the sources of information among women who had received fertility- or menopause-related information. Approximately one third of women (28.8%) had consulted a fertility specialist, and almost a quarter (24.7%) had consulted a menopause specialist.


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Table 3. Sources of Fertility- and Menopause-Related Information

 
Preferred Fertility- and Menopause-Related Communication Strategies
Table 4 lists the rankings of mean preference ratings for nine common patient education tools and strategies. The results suggest that an individual consultation with a fertility or menopause specialist was the most preferred method of receiving education about fertility- and menopause-related issues by women in this sample. This was followed by a decision aid, an information video, and question prompt sheet. Computerized media, such as the Internet and CD Rom, received low preference rankings, despite 90.8% of the sample reporting regular access to a computer. A support group was the least preferred method of receiving fertility- and menopause-related information.


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Table 4. Preferences for Format of Fertility- and Menopause-Related Information

 
Correlates of Current Perceived Importance of Fertility-Related Information
Bivariate analyses (Table 5) show that younger women (r = –0.244, P < .001) were significantly more likely to rate fertility-related information as extremely important. Women with plans for childbearing at diagnosis (Mann-Whitney U = 566.00, z = –7.50, P < .001), women with no children at diagnosis (U = 3,009.50, z = –5.73, P < .001), and women who were single (U = 3,062.50, z = –2.92, P = .003) were also significantly more likely to rate fertility-related information as extremely important.


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Table 5. Results of Bivariate Tests of Correlates of Current Perceived Importance of Fertility-Related Information

 
Three variables remained significant in the final model of the ordinal logistic regression analyses of correlates of perceived importance of fertility-related information. Women who had plans to have children at time of diagnosis (B = –2.83; P < .01; odds ratio [OR] = 16.94; 95% CI, 7.10 to 40.45), women without children at diagnosis (B = 0.69; P = .04; OR = 1.07; 95% CI, 0.29 to 1.36), and women who prefer more information (B = 0.44; P = .02; OR = 1.55; 95% CI, 1.07 to 2.25) were significantly more likely to rate fertility-related information as more important. The odds of women who had plans for childbearing at diagnosis attributing a higher importance rating to fertility-related information were greater than 16 times the odds of women without plans for childbearing at diagnosis (OR = 16.94; P < .001).

Correlates of Current Perceived Importance of Menopause-Related Information
The results from bivariate analyses in Table 6 show that women who experienced more menopausal symptoms (r = 0.200, P = .003), women with poorer quality of life as assessed by the FACT-B (r = –0.202, P = .002), women with higher levels of psychological distress (r = 0.131, P = .048), women with higher levels of anxiety symptoms (r = 0.138, P = .038), and women who prefer more information (r = 0.138, P = .038) were significantly more likely to rate menopause-related information as extremely important. Having treatment including endocrine therapy (Mann-Whitney U = 2,686.50, z = –3.78, P = .012), having plans for childbearing at diagnosis (U = 2,686.50, z = –3.78, P = .015), having no children at time of diagnosis (U = 4,176.5, z = –3.052, P = .043), and being single (U = 2,686.50, z = –3.78, P = .031) were also variables that were significantly associated with higher perceived importance of menopause-related information in bivariate tests.


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Table 6. Results of Bivariate Tests of Correlates of Current Perceived Importance Of Menopause-Related Information

 
Three variables remained significant in the final model of the ordinal logistic regression analyses of correlates of perceived importance of menopause-related information. Women who had plans to have children at time of diagnosis (B = 1.13; P < .01; OR = 3.10; 95% CI, 1.54 to 6.23), women who had treatment involving endocrine therapy (B = 0.650; P = .02; OR = 1.91; 95% CI, 1.10 to 3.32), and women with poorer quality of life (B = 0.031; P < .01; OR = 1.03; 95% CI, 1.01 to 1.05) were significantly more likely to rate menopause-related information as extremely important.


    DISCUSSION
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Consistent with the results of other studies of cancer patients' information needs,21,29,42 our study has shown that younger women want to be well informed about the impact of adjuvant therapy on fertility and menopausal status. Seventy-one percent of women in this sample reported that they had discussed fertility-related information with a health professional as part of their breast cancer treatment. This percentage is similar to the 72% of participants who had discussed fertility issues in a recent Web-based surveyof fertility-related information provision conducted by researchers in the United States.29 Our data also suggest that menopause-related issues are discussed slightly more frequently, with 86% of participants having reported menopause-related discussions as part of their breast cancer treatment. However, the rate at which fertility- and menopause-related issues were discussed in this study may be inflated because the women included in this sample were more educated than the general population.

Of concern is that almost a quarter of the women in this sample who were aged 40 years or less at diagnosis reported no discussion of fertility issues. Although this figure may have been influenced by recall, it points to unmet needs for fertility-related information among this age group. This study has also identified the most common fertility- and menopause-related questions among young women with a diagnosis of early breast cancer. A more thorough appreciation of questions about these topics will assist clinicians to better meet their patients' information needs. However, the next vital step is the development of better information tools about these issues. In Australia, there is currently a dearth of comprehensive written information tools about the impact of adjuvant treatment on fertility and menopausal status for young women with breast cancer. However, internationally, there have been some recent efforts to improve information provision about these issues, as well as an increase in the amount of Web-based information available about these matters, and several projects to develop information tools are ongoing. In the United States, an advocacy group, Fertile Hope, has been established to help people facing infertility as a consequence of cancer treatment. Interested readers should consult the Appendix for examples of fertility- and menopause-related information Web sites.

Our data suggests that the majority of patients receive verbal information only about fertility- and menopause-related issues, despite tools such as a decision aid or question prompt sheets being highly ranked options. Although there was strong interest in an information video, given the rapidly evolving science in these areas, audio-visual tools may not prove to be cost-effective measures because of the cost of updating them. Interestingly, receiving fertility- and menopause-related information in a support group was the least preferred format, perhaps reflecting the highly individual nature of these issues.

Women in this sample consulted a variety of health professionals to gather fertility- and menopause-related information; they most commonly consulted medical oncologists and surgeons for fertility-related information and medical oncologists and general practitioners for menopause-related information. Better patient education strategies about these issues should be coupled with professional development opportunities targeted at these groups. One interesting finding was participants' interest in receiving fertility- and menopause-related information from a fertility specialist or gynecologist, despite only 24% to 29% of women in our sample accessing these professionals. In Australia, it is not currently routine practice for a multidisciplinary breast clinic to include a fertility specialist or gynecologist; however, this model of care is currently under investigation at one Australian hospital (C. Saunders, personal communication, June 2004). Our results suggest that, from the patient's perspective, there may be an interest in such multidisciplinary approaches. However, barriers to widespread adoption of a multidisciplinary approach that includes gynecology experts include the following: the lack of knowledge that both medical oncologists and fertility specialists/gynecologists have in each other's discipline, the often pressing need to commence adjuvant treatment as soon as possible after surgery, and the limited access that women outside metropolitan cities have to fertility/gynecology specialists. If a more collaborative approach between fertility/gynecology services and oncology were offered to women in cities, then advances in telemedicine may be able to improve access for women in regional areas to these services.

Our results also suggest that the needs of women with breast cancer for fertility- and menopause-related information may change over time, which is consistent with other studies that have examined timing of cancer patients' information needs.43,44 Women in the present sample rated fertility- and menopause-related information as important across the treatment continuum. However, the need for fertility-related information significantly increased at time of treatment decision making and again in follow-up, and the need for menopause-related information increased in the later phases of treatment and follow-up care. Our clinical experience suggests that many patients currently only receive fertility-related information when they are choosing between adjuvant treatments. It is not common for this issue to be revisited after completion of therapy. Clinicians should provide information about the impact of adjuvant treatment on fertility status in a timely fashion before treatment begins, so that women can explore fertility-preserving options. However, our data suggest that clinicians should be prepared to actively revisit fertility issues at the end of treatment and during follow-up care. Menopause-related information should mainly be explored after completion of treatment.

This study also identified correlates of current perceived importance of fertility- and menopause-related information. Understanding which groups of patients think fertility- and menopause-related information is important is critical because it will enable clinicians to educate those most in need of the information. Correlates of perceived importance of fertility-related information were being childless at diagnosis, having plans for children at diagnosis, and having a tendency to prefer more information. Correlates of perceived importance of menopause-related information were having plans for children at diagnosis, having a poor quality of life, and having received endocrine therapy. These findings suggest that doctors should routinely ask women of this age group about plans for childbearing and their preferred amount of information when discussing fertility. Women treated with endocrine therapy and those with poorer quality-of-life outcomes may require more information about menopausal issues. Interestingly, there were no significant associations in multivariate models between other variables that were hypothesized to influence perceived importance of receiving fertility- and menopause-related information including prognostic indicators, age, or psychological distress. Clinicians should not assume that women who are younger or have better prognoses are more interested in exploring fertility issues.

ARTs are a rapidly evolving science. A case study of the first live birth after orthotopic transplantation of cryopreserved ovarian tissue has recently been published,45 suggesting that cryopreservation may be a more widely available fertility preservation method for young women undergoing treatment for cancer in the future. There are some examples of innovative interventions to preserve fertility in young women treated for cancer currently underway; for example, a randomized controlled trial aims to explore whether concurrent chemotherapy and gonadotropin-releasing hormone agonist treatment preserves ovarian function compared with standard chemotherapy.46 Although there is currently only limited level 1 evidence to guide the management of menopausal symptoms in breast cancer patients, this body of research is growing. Breast cancer patients are making decisions about strategies to manage menopausal symptoms every day and often in the absence of sufficient evidence regarding efficacy. It is imperative that patients understand the issues and make informed choices based on the best available evidence and that the information is given when it is most needed.

Further prospective research is needed to explore the association between providing fertility- and menopause-related information and psychological adjustment. It is possible that some women are willing to trade-off survival with the ability to maintain fertility; however, we are unable to ascertain this with the present data because all women in the current sample had participated in adjuvant therapy. Further research is needed to explore the relationship between fertility- and menopause-related information provision and patients' choice of adjuvant therapy.

It should be acknowledged in considering these findings that participants in this study were reporting retrospectively about their needs and experiences on a number of items, and thus, their responses may have been influenced by recall bias. Given that this study was the first of its kind, we had concerns that surveying women about these issues prospectively in the absence of providing information might elicit distress or influence treatment decision making. The present sample only included women who were experienced with treatments. It is unlikely that the present findings reflect the attitudes of women who refuse treatments because of the potential impact of treatment on their fertility. Further research of this group, even though they may comprise only a small minority of patients, is warranted. Our findings support the need for better patient education materials about the impact of adjuvant treatment on fertility and menopausal status and for more widelyavailable multidisciplinary approaches to education that include fertility or menopause specialists.


    Appendix
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Examples of Web-based resources for fertility- and menopause-related information for young women with breast cancer: (1) Fertile Hope is a United States–based organization dedicated to helping cancer patients faced with infertility, www.fertilehope.org/; (2) National Breast Cancer Centre (Australia) has prepared "Clinical Practice Guidelines for the Management and Support of Younger Women with Breast Cancer," which includes sections pertaining to fertility and menopause issues, http://www.nbcc.org.au/bestpractice/youngerwomen/index.html; (3) BreastCancer.Org provides information to women with breast cancer and their families and has pages dedicated to fertility, pregnancy, and adoption issues and coping with menopausal symptoms, http://www.breastcancer.org/fertility_pregnancy_adoption.html and http://www.breastcancer.org/bey_cope_meno_nTherap.html; (4) The Lavender Trust (United Kingdom) provides information and support to women with breast cancer; its Web site has pages dedicated to young women and fertility issues, http://www.breastcancercare.org.uk/Breastcancer/Youngerwomenandbreastcancer/Fertilityissues; and (5) the Fertility and Cancer Project is a research project funded by the Susan G. Komen Breast Cancer Foundation, which aims to determine the impact of providing Web-based educational information and online resources for young women with breast cancer who have fertility concerns; all of the educational materials are available online at http://www.fertilityandcancerproject.org/.


    Authors' Disclosures of Potential Conflicts of Interest
 TOP
 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
Althoguh all authors have completed the disclosure declaration, the following authors or their immediate family members have indicated a financial interest. No conflict exists for drugs or devices used in a study if they are not being evaluated as part of the investigation. For a detailed description of the disclosure categories, or for more information about ASCO's conflict of interest policy, please refer to the Author Disclosure Declaration and the Disclosures of Potential Conflicts of Interest section in Information for Contributors.


Authors Employment Leadership Consultant Stock Honoraria Research Funds Testimony Other

B. Thewes AstraZeneca (B)
B. Meiser AstraZeneca (B)
R. Baber Pfizer (A); Organo (A); Wyeth-Ayerst (A)
M. L. Friedlander AstraZeneca (B)

Dollar Amount Codes (A) < $10,000 (B) $10,000-99,999 (C) ≥ $100,000 (N/R) Not Required


    NOTES
 
Supported by a National Breast Cancer Foundation "National Association of Women in Superannuation Post-Graduate Scholarship" (B.T.), a National Health and Medical Research Council of Australia Public Health Fellowship (B.M.), and an unrestricted educational grant-in-aid from AstraZeneca.

This work was undertaken as part of a conjoint appointment (M.L.F. and B.M.) at the Prince of Wales Hospital Clinical School, University of New South Wales, Randwick, Australia.

Authors' disclosures of potential conflicts of interest are found at the end of this article.


    REFERENCES
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 ABSTRACT
 INTRODUCTION
 PATIENTS AND METHODS
 RESULTS
 DISCUSSION
 Appendix
 Authors' Disclosures of...
 REFERENCES
 
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Submitted November 30, 2004; accepted April 7, 2005.




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