Breast cancer is the most common cancer in reproductive age women. The aim of this study is to assess the knowledge, attitude and intention on fertility preservation among women diagnosed to have breast cancer. This is a multi-centre cross-sectional questionnaire study. Reproductive age women diagnosed with breast cancer attending Oncology, Breast Surgery and Gynaecology Clinics and support groups were invited to participate. Women filled in paper or electronic form of the questionnaire. 461 women were recruited and 421 women returned the questionnaire. Overall, 181/410 (44.1%) women had heard of fertility preservation. Younger age and higher education level were significantly associated with increased awareness of fertility preservation. Awareness and acceptance of the different fertility preservation methods in reproductive age women with breast cancer was suboptimal. However, 46.1% women felt that their fertility concerns affected their decision for cancer treatment in some way.
Breast cancer is the most common cancer in reproductive age women in Hong Kong. Advances in cancer treatment has resulted in high cure rate of breast cancer and an overall five-year relative survival rate of patients with breast cancer of more than 80% in many developed countries[
Guidelines on fertility preservation emphasize the importance of counselling patients on the impact of cancer treatment on their reproductive function and considering fertility preservation for those likely to be affected[
Studies evaluating breast cancer patients' knowledge, perceptions and needs are generally of small sample size or descriptive in nature. The aim of this study is to assess the knowledge, attitude and intention on fertility preservation among women diagnosed to have breast cancer, so as to better understand their actual overall needs, identify the inadequacies and thereby target improvement on this aspect of oncological care.
This is a multi-centre cross-sectional questionnaire study on reproductive aged women (18–45 years old at the time of recruitment) who had been diagnosed with breast cancer. Women who could not read Chinese or English were excluded from the study.
Women were recruited from Clinical Oncology Clinics at Queen Mary Hospital, Queen Elizabeth Hospital and Tuen Mun Hospital, Breast Surgery Clinics at Queen Mary Hospital, Kwong Wah Hospital and Pok Oi Hospital, Gynaecology Clinic at Queen Mary Hospital and patient support groups of the Hong Kong Cancer Fund. The questionnaire was also available online on our departmental social media website, so patients seen in other clinics or in the private sector who self-identified themselves as eligible according to the inclusion and exclusion criteria could also have access to the questionnaire and participate in the study. Recruitment period was from September 2020 to February 2022.
Ethics approval was obtained from Institutional Review Board of the University of Hong Kong/ Hospital Authority Hong Kong West Cluster, Kowloon Central Cluster Research Ethics Committee and the New Territories West Cluster Research Ethics Committee. All research was performed in accordance with relevant guidelines and regulations. Informed consent was obtained from all participants. The questionnaire was anonymous with the option for participants to leave their names and phone number if they wished to be contacted by the research team.
The questionnaire consisted of 50 questions in four sections: (
Participants could choose to complete the questionnaire either in paper form which was distributed in the clinic by the attending doctor or research nurse or electronically via a QR code printed on posters, pamphlets or on our Departmental social media. The questionnaire required approximately 20 min to complete. Completed paper questionnaires were returned to the research nurse at the end of the consultation, who inputs the data into the computer. The answers in the electronic questionnaire were automatically stored in an Excel file.
The sample size needed for a confidence interval of 5 with 95% confidence level in a large population of 10,000 is 370. Accounting for incomplete return of questionnaires in 20%, 450 women were needed.
Statistical analysis was performed using SPSS (version 26, IBM Corporation, Armonk, NY) and are mainly descriptive. Comparisons between the groups were made using the Chi-square and Mann–Whitney U-test for categorical and continuous variables respectively. As some patients did not answer all questions, the denominator (n) of different categories were included in the table. P value of < 0.05 was considered statistically significant.
In total, 461 women consented (on paper or electronically) and 421 questionnaires were returned. Those with significant missing data were excluded in the main analysis. The flow of participants is shown in Fig. 1. As some patients did not answer all questions, the denominator (n) of different categories were included. The background demographics of the participants are shown in Table 1. The mean age of the women is 40.4 ± 4.5 years (mean ± SD).
Graph: Figure 1Flow chart of participants.
Table 1 Demographic characteristics of participants.
Age (years) (mean 40.4 Ethnicity (n = 421) Chinese 400 (95.0) Non-Chinese Asians 19 (4.5) Caucasians 2 (0.5) Education level (n = 421) Primary 5 (1.2) Secondary 194 (46.1) Associate degree or diploma 35 (8.3) Tertiary or above 187 (44.4) Occupation (n = 421) Clerical 196 (46.6) Housewife 105 (24.9) Professional 66 (15.6) Manual labour (including hair dresser, domestic helper, saleslady, painter) 30 (7.1) Unemployed 12 (2.9) Others 12 (2.9) Religion (n = 421) Buddhism 32 (7.6) Catholic 22 (5.2) Christian 82 (19.5) Nil 283 (67.2) Others 2 (0.5) Household income (n = 418) Less than HK$10,000 35 (8.4) HK$10,000–19,999 71 (17.0) HK$20,000–29,999 98 (23.4) HK$30,000–39,999 69 (16.5) More than HK$40,000 145 (34.7) Marital status (n = 418) Married 267 (63.9) Single, no committed relationship 100 (23.9) Single, stable partner 51 (12.2) Sexual orientation (n = 418) Heterosexual 395 (94.5) Homosexual 6 (1.4) Bisexual 2 (0.5) Have not decided/ do not want to disclose 15 (3.6) Pregnant before (n = 417) 217 (52) Having child(ren) (n = 417) None 216 (51.8) One 103 (24.7) Two or more 98 (23.5) Received fertility treatment before (n = 413) 37 (10.4) Time since diagnosis of breast cancer (months) (n = 413) 0–6 57 (13.8) 6–12 44 (10.7) 13–24 79 (19.1) 25–60 117 (28.3) > 60 116 (28.1) Cancer treatment received/ planned (n = 413) Surgery 387 (93.7) Chemotherapy 283 (68.5) Radiotherapy 328 (79.4) Hormonal therapy 145 (35.1) Targeted therapy 94 (22.8) Not sure 8 (1.9) Stage (n = 413) Stage I 115 (27.8) Stage II 164 (39.7) Stage III 68 (16.5) Stage IV 9 (2.2) Not sure 57 (13.8) Family history of breast or ovarian cancer (n = 413) 69 (16.7)
Data presented as mean
242/410 (59.0%) women thought that breast cancer treatment would affect fertility, 129/410 (31.5%) women were not sure and 39/410 (9.5%) did not think breast cancer treatment would affect fertility.
Figure 2 showed the awareness, perceived availability and acceptance on the different modes of fertility preservation.
Graph: Figure 2Knowledge and acceptance on the different modes of fertility preservation.
Overall, 181/410 (44.1%) have heard of fertility preservation. Women who had heard of fertility preservation were significantly younger, had higher education level and had higher monthly family income than women who have not heard of fertility preservation (Table 2). Univariate binary logistic regression showed that age and education level were significantly associated with awareness of fertility preservation (Table 3).
Table 2 Patient characteristics and knowledge of fertility preservation.
Heard of fertility preservation Not heard of fertility preservation P value Age (years) 39.7 ± 4.7 41.0 ± 4.2 0.004* Ethnicity 0.937 Chinese 172/390 (44.1) 218/390 (55.9) Non-Chinese 9/20 (45.0) 11/20 (55.0) Education level 0.000* Tertiary 105/181 (58.0) 76/181 (42.0) Below tertiary 76/229 (33.2) 153/229 (66.8) Family income 0.001* ≥ HK$30,000 109/210 (51.9) 101/210 (48.1) Below HK$30,000 72/200 (36.0) 128/200 (64.0) Parity 0.282 Nulliparity 99/212 (46.7) 113/212 (53.3) Multiparity 82/198 (41.4) 116/198 (58.6)
Data presented as mean
Table 3 Univariate binary logistic regression analysis of factors in predicting awareness of fertility preservation.
B Exp (B), 95% CI P value Age −0.066 0.936, 0.892–0.982 0.007* Ethnicity 0.103 1.109, 0.426–2.883 0.832 Education level 0.922 2.515, 1.554–4.072 0.000* Family income 0.215 1.240, 0.777–1.981 0.367 Parity −0.165 0.848, 0.549–1.309 0.848
*Statistically significant.
121/405 (29.9%) were optimistic that fertility preservation options could lead to a live birth (more than 50% success rates) in cancer survivors. 150/405 (37.0%) thought that it was possible (less than 50% success rates) and 134/405 (33.1%) thought that the overall success was low or that they were still experimental. Figure 3 showed their views on in vitro fertilization, pregnancy and breastfeeding. 37/405 (9.1%) were aware that one needed to be married to use frozen oocytes for assisted reproductive treatment in Hong Kong based on the Code of Practice of the Council on Human Reproductive Technology.
Graph: Figure 3View on in vitro fertilization, pregnancy and breastfeeding. Data presented in bar charts as number (percentage).
In our cohort, having children was important in 92/403 (22.8%) women. The majority was neutral (168/403, 41.7%), and it was not so important in 143/403 (35.5%) women. 54/403 (13.4%) women would like to have (further) children, 244/403 (60.5%) did not want to have (further) children and 105/403 (26.1%) were not sure. Factors affecting their decision of whether to have or not have further children, reasons for wanting or not wanting more information about fertility preservation before starting treatment, and reasons for considering or not considering fertility preservation procedures are shown in Table 4. The factors affecting women's consideration of fertility preservation is shown in Fig. 4. 66% would not consider fertility preservation before cancer treatment.
Table 4 Attitude towards fertility preservation.
1. Factors affecting whether they would like to have or not have further children n = 403 Personal choice 174 (43.2) Financial concerns 157 (39.0) Caring for them if cancer recurs 153 (38.0) Worry that pregnancy would increase the risk of recurrence 144 (35.7) Worry that children may have an increased risk of developing cancer 106 (26.3) Medical concerns (age, already had hysterectomy) 4 (1.0) 2. Reasons for wanting to understand more about fertility preservation before staring cancer treatment n = 230 This is a human right to reproductive choices 169 (73.5) I feel more in control 135 (58.7) I do not want to regret in future 95 (41.3) I wish to have children in future 52 22.6) 3. Reasons for not wanting more information about fertility preservation before starting cancer treatment n = 172 I do not have strong wish to have children in future / have kids already 135 (78.5) I feel overwhelmed by the cancer diagnosis already and this is too complicated for me to understand 27 (15.7) I do not want to delay treatment as I am not going to do anything 20 (11.6) These can be discussed later when I recover 25 (14.5) I believe there will be medical advancement in future making childbearing possible for me 10 5.8) 4. Reasons for considering fertility preservation procedures before starting cancer treatment n = 135 I may regret in future if I do not take the chance now 79 (58.5) It is a scientifically feasible option 59 (43.7) It is a hope for my future 42 (31.1) Conserving fertility is very important to me 34 (25.2) Others 2 (1.5) 5. Reasons for not considering fertility preservation procedures before starting cancer treatment N = 264 I do not want to delay cancer treatment 150 (56.8) No plans to have children/ completed family 53 (20.1) It is invasive, I do not want to have additional procedures and related risks 50 (18.9) I may go through cancer treatment without fertility problems, I may wish to wait and see 22 (8.3) This is against my cultural, religious belief or personal wish 11 (4.2) I am doubtful about the success rate and safety of procedures 12 (4.5) Fertility preservation is too costly 5 (1.9)
Data presented as number (percentage).
Graph: Figure 4Factors affecting women's consideration of fertility preservation, n = 389.
When we only included nulliparous women, 113/212 (53.3%) have not heard of fertility preservation. 133/208 (63.9%) would want further information about fertility preservation before their cancer treatment and 80/205 (39.0%) stated that they would consider fertility preservation before cancer treatment.
Overall, 184/386 (47.7%) women did not accept any delay in cancer treatment to attempt fertility preservation. 49/386 (12.7%) and 62/386 (16.1%) accepted 1 week and 2 weeks delay respectively.
127/386 (32.9%) women felt that they should pay for fertility preservation, 167/386 (43.3%) were neutral and 92/386 (23.8%) felt that they should not have to pay for fertility preservation. 326/386 (84.5%) women felt that the consultation should be provided by the government or cost below HK$1000. For the fertility preservation procedure, 177/386 (45.9%) women thought that it should be funded by the government. 92/386 (23.8%) and 88/386 (22.8%) were willing to pay less than HK$10,000 and between HK$10,000–39,999 respectively. Only 4/386 (1.0%) were willing to pay more than HK$70,000.
166/382 (43.5%) women recalled that the doctor had discussed fertility issues with them since cancer diagnosis. If discussion on fertility preservation occurred, the discussion was done by the breast surgeon (116/166, 69.9%) clinical oncologist (96/166, 57.8%), reproductive medicine specialist (18/166, 10.8%) and family doctor (7/166, 4.2%). The discussion on fertility was initiated by the doctor in 111/166 (66.9%) and by the patient 45/166 (27.1%) or her family (10/166, 6.0%) and took place before cancer treatment in 143/166 (86.1%) of women but only after recovery in 22/166 (13.2%) women.
The discussion most commonly included the effect of cancer therapy on fertility (142/166, 85.5%), options of fertility preservation suitable in their situation (55/166, 33.1%), procedure and risks of fertility preservation (33/166, 19.9%), success of fertility preservation (21/166, 12.7%) and cost of fertility preservation (17/166, 10.2%).
176/382 (46.1%) women felt that fertility concerns affected their decision for cancer treatment in some way.
Our study showed that less than half of reproductive age women with breast cancer have heard of fertility preservation. Women who were younger and had higher education level had better awareness on fertility preservation compared to their older and less educated counterparts. Established techniques like oocyte cryopreservation and embryo cryopreservation were more well-known but much fewer women were aware of other fertility preservation methods including ovarian tissue cryopreservation or gonadotrophin releasing hormone agonists during the course of chemotherapy. Acceptance of different fertility preservation methods was generally low.
Fertility preservation allows young women diagnosed with cancer a way to take action when confronted with the potential loss of fertility as a result of cancer and its treatment[
Many factors can affect women's consideration to whether to pursue fertility preservation. Worry of delaying cancer treatment and the perceived adverse effects of fertility cryopreservation procedures on cancer prognosis can cause reluctance of healthcare professionals to refer the patients for fertility preservation[
Fertility preservation is a rapidly expanding field, but is still developing especially in many Asian countries[
Until recently, fertility preservation was only available in Hong Kong as a private service. Financial cost had been identified as a barrier to providing fertility preservation. One cycle of ovarian stimulation with oocyte cryopreservation may cost HK$60,000 to $160,000 in the private sector. Cancer treatment is costly and both physically and emotionally challenging, and financial stress can further be compounded by the loss of work after cancer diagnosis. The newly introduced programme for public-funded fertility preservation allowed patients to undergo the oocyte/ embryo freezing cycle at one-third of the cost of private services. Majority of the women agreed that the fertility preservation procedure should be fully or partially funded by the government.
The provision of reproductive technology procedures, the handling, storing or disposal of gametes or embryos used or intended to be used in connection of a reproductive technology procedure are regulated by the Code of Practice of the Council on Human Reproductive Technology in Hong Kong. Women are required to be legally married to use the frozen oocytes. Only less than 10% women in our study were aware that one needed to be married to use frozen oocytes for assisted reproductive treatment in Hong Kong. The majority either did not know or thought that they do not have to be married to use the cryopreserved oocytes. One should bear in mind the different social aspects and legal regulation in different countries, including whether marriage is a prerequisite for using frozen oocytes, coverage and costs. It would have been interesting to find out the group of women who actually underwent fertility preservation procedures to assess if they have better knowledge and acceptance of the procedure, but whether women actually had fertility preservation was not specifically asked in our questionnaire. Around 10% of women had fertility treatment before, many of which may be related to fertility preservation procedures.
The strength of this paper is that it was a large, multi-centre study involving women of reproductive age with breast cancer from various clinical (oncology, surgical and gynaecological) units as well as in the community. We included women at various stages of breast cancer, including those who have already completed cancer treatment. While this would make the results more representative, this would also include the full spectrum of women who were recently diagnosed and were consulting for fertility preservation and others who may have completed treatment for several years and is on long-term post-treatment follow up at the breast or clinical oncology clinic. However, each woman is unique in their views and circumstances with regard to fertility. We should assess reproductive intentions and tailor reproductive care appropriate for the individual's intentions.
As it is a self-administered questionnaire, we did not know the true response rate and women who were more concerned with fertility preservation would proceed to complete the questionnaire. Although the questionnaire was available online and patients seen in other clinics or in the private sector who self-identified themselves as eligible according to the inclusion and exclusion criteria could have access to the questionnaire and participate in the study, 410/461 (89%) of the women were recruited and questionnaires were performed by paper (distributed to eligible patients by research staff) or in the presence of doctors or research nurse. In addition to that, some of the participants were approached by research staff at the study sites, private doctors and patient support groups who identified the patients based on the inclusion and exclusion criteria. The percentage of women who self-identified themselves as eligible on social media but in fact may not fit the inclusion and exclusion criteria is likely to be low and unlikely to cause significant bias. As a self-administered questionnaire, women could have misunderstood the actual treatment received or the questions being asked in the questionnaire. The questionnaire was distributed to a pilot group of patients to enhance its content, clarity and length before finalised. Research staff was available at the clinic to clarify any questions the women had when they filled out the questionnaire. The questionnaire also relied on retrospective recall so there may be recall bias but it also reflected the actual information perceived to be important and retained by the patients even years after cancer diagnosis.
Less than 50% women with breast cancer were aware of fertility preservation and acceptance of the different fertility preservation methods in reproductive age women with breast cancer was low.
We would like to thank the Hong Kong Cancer Fund for promotion of the questionnaire, Ms. Joyce Yuen, Ms. Man Tong, Ms. Leann Au for their help in patient recruitment and logistics.
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The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.
The authors declare no competing interests.
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By Jennifer K. Y. Ko; Charleen S. Y. Cheung; Heidi H. Y. Cheng; Sofie S. F. Yung; Ting Ying Ng; Winnie W. Y. Tin; Ho Yan Yuen; Martin H. C. Lam; Ann S. Y. Chan; Sara W. W. Fung; Vivian C. M. Man; Ava Kwong and Ernest H. Y. Ng
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