Fertility- and early menopause related information needs of young breast cancer survivors

Fertility- and early menopause related information needs of young breast cancer survivors | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Fertility- and early menopause related information needs of young breast cancer survivors Ellen Marie Sparidaens, Catharina CM Beerendonk, Kathrin Fleischer, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-970747/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 3 You are reading this latest preprint version Abstract Background Approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finished treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility- and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material. Methods A qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4). Results Professionals indicate that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors report unmet information needs. Most important are a) fertility preservation options, b) the risk of menopause or infertility, and c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting cancer patients. Conclusions Fertility- and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed en nationally implemented. This way, professionals in providing breast cancer care are accommodated with an information tool that helps them meet the information needs and preferences of their patients. Information needs fertility early menopause breast cancer survivors follow up Background Breast cancer is the most common cancer in women aged 15-39 years worldwide [ 1 ]. Treatment can be gonadotoxic, leading to temporary or permanent infertility, or premature ovarian insufficiency (POI) later in life [ 2 – 4 ]. Furthermore, young women with a hormone-positive tumor are often treated with adjuvant antihormonal treatment for years after their primary treatment has finished; a period in which they are not able nor allowed to conceive. Whether fertility is regained after the completion of primary and adjuvant treatment depends on factors such as age, type of treatment and cumulative dose of chemotherapy received [ 2 – 4 ]. Due to the social trend of women having children later in life, a growing proportion of women diagnosed with breast cancer does not have completed their family yet [ 5 ]. Moreover, major advances in oncology practice over the years have improved breast cancer survival rates. This contributes to the fact that approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finished treatment [ 6 ]. The majority of them experiences concerns about the possibility to be infertile after cancer treatment [ 7 ]. These concerns are often associated with depressive symptoms and a diminished quality of life among young cancer survivors [ 8 – 11 ]. This occurs not only shortly after diagnosis and treatment, but has been found to last years beyond the completion of treatment [ 12 ]. Loss of fertility can be experienced as painful as the cancer diagnosis itself [ 13 ]. Younger premenopausal breast cancer survivors report a greater need for information and psychosocial guidance compared to older postmenopausal women regarding topics like fertility and sexuality [ 14 , 15 ]. Premenopausal women often feel that the information they have received is insufficient or conflicting [ 16 – 18 ]. Professionals do not always feel the necessity of discussing fertility, and women often do not feel encouraged to ask questions about it [ 16 , 19 ]. This particularly appears to be the case for women who are single at the time of their diagnosis and women who have a poor prognosis [ 20 ]. However, receiving information on fertility is important to all premenopausal breast cancer patients [ 18 ]. Counseling about the risk of infertility prior to cancer treatment has been proven to significantly improve quality of life after cancer treatment [ 10 , 21 ]. Therefore, current international breast cancer guidelines focus on informing breast cancer patients on the possibility of reduced fertility prior to treatment [ 22 – 24 ]. This is by all means important, because this is the moment a woman needs to be aware of the risks of various treatments for her fertility and the different available fertility preservation options, in order to make a well-informed treatment decision [ 4 , 5 , 22 – 25 ]. However, concerns about fertility may also arise after cure for cancer in both women who were and were not previously concerned about their fertility [ 20 , 26 ]. Therefore, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual as well. Since current guidelines lack any recommendations on which information should be provided to breast cancer survivors and how this should be offered [ 22 – 24 ], the present study was designed. Our research question was: what are the fertility- and early menopause related information needs of young breast cancer survivors from both professionals’ and patients’ perspectives and how should this information be provided? Methods Study design The design of this qualitative study, performed in the Netherlands, consisted of four phases: 1) identification of relevant topics concerning fertility- and early menopause related information from a professional perspective, 2) identification of fertility- and early menopause related information needs from a patient perspective, 3) exploration of needs and preferences of stakeholders involved in breast cancer care regarding development and implementation of online information material, 4) development and implementation of the information. Ethical approval of this study was proposed, but was not required according to the local research ethics committee (CMO Arnhem-Nijmegen file number 2015-1779). All participants signed for informed consent. The COREQ checklist guided the study conduct and reporting. Setting Breast cancer care in the Netherlands is provided in university hospitals, large non-university teaching hospitals and small non-teaching hospitals. Women are primarily diagnosed and treated by a medical oncologist and/or a surgical oncologist. Treatment is multidisciplinary and can also involve a radiation oncologist, radiologist, pathologist, breast cancer nurse, clinical geneticist, plastic surgeon, gynecologist and a psychologist. The breast cancer nurse coordinates the treatment, is easily accessible for the women, discusses many practical and emotional issues with them and also delivers a part of the follow up care. Current Dutch guidelines state that all women should be informed about the risk of infertility prior to their treatment and that they should be referred to a specialist in fertility preservation if desired [ 22 ], although implementation of this guideline is still inadequate. The specialist in fertility preservation provides information about the risk of infertility or POI and provides counseling about fertility preservation options. A potential delay in breast cancer treatment is taken into account and discussed with the oncologist. The oncologist is supposed to revisit the subject at the start of follow-up and refer women to a gynecologist again if they have questions [ 27 ]. Fertility preservation is centralized in In Vitro Fertilization-centers in the Netherlands. Phase 1: identification of relevant topics from a professional perspective Participants In this phase, the information needs from a professional perspective were identified. Thirteen semi-structured interviews were conducted with a panel of professionals in providing breast cancer care, consisting of five medical oncologists, two surgical oncologists, two gynecologists specialized in fertility preservation, three breast cancer nurses and one specialist in adolescent and young adult cancer care (AYA). The experts originated from two university hospitals and three large teaching hospitals throughout the Netherlands via purposeful sampling [ 28 ]. The interviews were preferably conducted face to face, otherwise by phone. Data collection All interviews were conducted by the first author (EMS) between January and June 2016. The topic guide for the interviews was based on a PubMed search on the terms ‘information’, ‘fertility’, ‘menopause’ and ‘breast cancer’. Items regarding fertility- and menopause related information for women diagnosed with breast cancer were included in the topic guide. Experts were asked about their experiences concerning fertility and early menopause with women before, during and after breast cancer treatment. For example: which information do they offer women concerning these topics? What questions do women ask? Is there information material available in writing or online? The topic guide is included in Appendix A. Data analysis Interviews were recorded and transcribed verbatim. Relevant items concerning fertility or early menopause were identified by EMS, which was supervised by WN. No discrepancies arose during analysis. All items that were identified, were included in the topic guide for the interviews with breast cancer survivors (phase 2). Phase 2: identification of information needs from a patient perspective Participants In this phase the information needs from a patient perspective were identified, using semi-structured interviews. Eligible for inclusion were young female breast cancer survivors, aged 20-45 years old, who had completed their initial treatment, i.e. surgery, chemotherapy and/or radiation therapy, and were currently in their follow up period in one of two participating clinics, i.e. a university hospital and a large teaching hospital. Some women still received antihormonal treatment. Women were consecutively invited to participate during follow up appointments with their oncologist or breast cancer nurse and received written information about the study. Women who agreed to be informed, were contacted by the researcher a few days later, to see if they had further questions and if they wanted to participate. The number of participants was determined by data saturation [ 29 ]. After reaching data saturation, two additional interviews were conducted to confirm saturation. Data collection The interviews were conducted by the female first author (EMS, MD) between April and December 2017. The interviewer was working as a PhD student and had previously received training in qualitative research techniques and also had experience with interviewing techniques. She was not involved in the participants treatment. Interviews were preferably conducted face-to-face in the clinic, but if this was not possible, they were conducted by phone. Each interview started with an explanation of the research goals. The topic guide of the interviews was based on the results of phase 1, i.e. the interviews with the expert panel. It contained open questions, for example on the information women received on fertility and early menopause, current information needs, and online information seeking behavior. Women were encouraged to elaborate on their answers. The topic guide was flexible to allow for new topics that were brought up by participants. The topic guide is included in Appendix B. At the end of each interview women completed a short sociodemographic questionnaire. They were also asked to compose a priority list with a top 5 of most important items concerning fertility- and early menopause related information. Data analysis Interviews were recorded and transcribed verbatim. Field notes were made by the researcher. Items regarding fertility- or menopause related information were coded using Atlas.ti (version 8.1.28). Thematic analysis was used to identify themes and sub-themes from dominant concepts in the raw data [ 30 ]. Cross-case analysis was conducted, where data from all participants were combined rather than analyzed as individual cases. A constant comparative method was used to interpret the data, continuously reviewing the transcripts [ 29 ]. All transcripts were coded individually by the interviewer and a research assistant (female medical student) to obtain investigator triangulation [ 31 ]. Emerging codes were discussed until consensus was reached. If consensus would not be achieved a third researcher (WN) would be consulted. This turned out not to be necessary. Analysis of the priority lists included all items that were noted concerning fertility or early menopause. These items received a score based on their ranking on the specific priority list (first ranked 5 points, second one 4 points, third one 3 points, etc.). Phase 3: exploration of needs and preferences of stakeholders regarding development and implementation of online information material Participants and data collection The goal of this phase was to identify the needs and preferences of major stakeholders involved in breast cancer care, concerning the design, development and national implementation of information material about fertility and early menopause for young breast cancer survivors. Eighteen stakeholders were interviewed, representing eight patient organizations, seven professional associations in the field of breast cancer care and three medical insurance companies. They were asked about their view on nine aspects of design, development and implementation of the information material which were compiled by the research team: When should the information be offered? Who should offer the information? Should every premenopausal breast cancer patient receive the information? How detailed should the information be? In what format should the information be available? Should the information be personalized or interactive? What attributes to trustworthiness of information for patients? Should the information be integrated in existing platforms? How should understandability of the information be ensured? The interviews were conducted by a research assistant. They were recorded and transcribed verbatim. Data analysis The research assistant analyzed the interviews, which was supervised by the first author (EMS). For each of the nine aspects described earlier, different scenarios for implementation were extracted. The scenarios were weighed by both researchers based on six criteria: Patient preferences Expert preferences Financial investment Time investment Existing literature The proportion of patients that is being reached in a scenario This eventually led to the conclusion of a widely supported recommendation concerning the design, development and national implementation of the information material. Phase 4: development and implementation of online information material In phase 1 and 2 the information needs from both a professional and a patient perspective were identified. Phase 3 led to the conclusion of a widely supported recommendation concerning the design, development and national implementation of the information material. Finally, in phase 4 the information material was developed and implemented based on the results of the previous phases. The information material was developed by the researchers in collaboration with stakeholders interviewed in phase 3. There were several rounds of feedback from both professionals and patients, before the information material was implemented. Results Phase 1: identification of relevant topics from a professional perspective Out of the thirteen interviews with professionals in providing breast cancer care, eleven interviews were face to face and two interviews were conducted by phone. The duration of the interviews ranged from 23 to 44 minutes. All relevant information items concerning fertility or early menopause that were identified, were included in the topic guide for the interviews with breast cancer survivors, which were performed in phase 2. Data saturation was reached after the eleventh interview, i.e. no new information items could be added to the topic guide. The topic guide is presented in Appendix B. Findings originating from the interviews with professionals were that they state that the consequences of breast cancer treatment on fertility and possible early menopause were mainly discussed before the start of treatment and only occasionally during and after treatment. Professionals feel like it is their task to initiate the conversation on these topics, since they feel that women struggle to address these topics themselves. Professionals indicate that there are no guidelines on when to discuss these topics, but they do so based on their own intuition. During breast cancer treatment and during the follow up period, both medical and surgical oncologists say that they receive very little questions on fertility and possible early menopause. On the other hand, breast cancer nurses do say that they are asked about these topics by patients, although they feel that they don’t possess the knowledge to properly answer these questions. Both breast cancer nurses and surgeons indicate that they feel the oncologist is the designated professional to elaborate on these topics with patients and survivors. Phase 2: identification of information needs from a patient perspective Participants A total of eighteen women participated in an interview. Data saturation was reached at the sixteenth interview. Two additional interviews yielded no new information. Duration of the interviews ranged from 20 to 60 minutes. Mean age at breast cancer diagnosis was 35,5 years old, ranging from 21 to 44 years old. Time since diagnosis varied from nine months to twelve years. Most women had been treated with surgery and chemotherapy. Eight out of eighteen participants still had a future childbearing wish at the time of their diagnosis, five of them had chosen fertility preservation. Sociodemographic characteristics are presented in Table 1 . Interview results Several information themes were identified from the interview data and are consecutively described below. Quotes from the interviews are presented in Table 2 . Counseling on possible infertility and early menopause The risk of infertility and early menopause was discussed with most women at the time of their diagnosis by their medical oncologist, surgical oncologist or breast cancer nurse. Most important topics were the risk of diminished fertility, fertility preservation, chemotherapy-induced menopause, contraception and hereditariness of breast cancer. However, almost half of the women were not satisfied with the amount of information they received and four of them reported not having received any information on the subject. After completion of their initial treatment, the majority of women report having brought up the topic themselves because they did not feel like they received enough information. They preferred discussing the topic with their breast cancer nurse, medical oncologist or surgical oncologist (Table 2 , quote 1). Most important topics at this point in time were the current fertility status, menopause related symptoms and their treatment, whether to start hormone therapy and contraceptive advice. Only one woman was referred to a gynecologist. Availability and design of information material Many participants reported to have consulted other healthcare professionals for support and specialized knowledge, for example their general practitioner, a physical therapist, gynecologist, psychologist or an orthomolecular physician. Furthermore, most women searched for infertility and early menopause-related information online. Search terms that were often used were self-care advices, fertility after breast cancer, menopausal symptoms, side-effects of cancer treatment, sexuality and psychological matters. Women mainly relied on the website of their hospital and the website of the Dutch Breast cancer Association (BVN) to assess reliability of online information. They often described struggling to find reliable information specific to their situation as a young premenopausal woman with breast cancer, or young breast cancer survivor, since most information deemed generic or unreliable to them. (Table 2 , quote 2) Women reported to be in need of written information on fertility and early menopause. They wanted to prepare themselves for hospital visits and read the information again afterwards. This would give them a feeling of being in control and being able to acquire information in their own pace. The preferred medium would be a website. The use of a short folder or business card with some information highlights and the link to the website was recommended. Women suggested that a website should use a filter, for example by age or stage of treatment, or use chapters or hyperlinks in the text to avoid women from feeling overwhelmed by the amount of information. Women felt that the information should be both concise and detailed, factual and easily accessible. (Table 2 , quote 3) Most participants thought that the information should be developed in collaboration with patient organizations and various hospitals, so that the information is tailored to patient’s needs, perceived as reliable and easy to find. Many participants would like to be able to ask questions online, preferably to health care professionals. Some women would like a forum to share experiences with peers. Other women were concerned about a forum, worrying that it would be easily contaminated with overly dramatic stories and unconfirmed claims. Participants believed that every premenopausal woman who is diagnosed with breast cancer should receive information about fertility and the risk of early menopause, regardless of their age and marital status. Furthermore, they indicated that these topics should be revisited throughout follow up appointments, as they feel their information needs change throughout time. (Table 2 , quote 4) Information topics: fertility Women are in need of personalized information that is specific to their situation as a young woman with a diagnosis of breast cancer. Women have questions such as: When should I give up hope of my menstruation cycle returning? When would my body be ready for pregnancy? And when are the risks minimal? Does a pregnancy increase the chance of breast cancer recurrence? Is it safe to stop hormone therapy to try and conceive? (Table 2 , quote 5) Furthermore, women have questions like: Should I be using contraception? If I want to conceive, should we try ourselves? For how long? When can I approach a fertility specialist? When can I use cryopreserved eggs or embryos? Can my child be healthy? Is my chance of a miscarriage increased? Will I be able to breastfeed? What are the alternatives to biological parenthood? Information topics: early menopause Women indicated that they wanted to understand more about the physiology of menopause. They wanted to learn about hormonal changes and the impact on their body. The majority of the participants had experienced or were still experiencing menopause related symptoms. They were in need of information on possible treatment and self-care advices, such as nutrition and exercise. Furthermore, they wanted information on the long term consequences of early menopause. (Table 2 , quote 6) Women wished for information that also targets their relatives. They felt like their relatives are also in need of support in dealing with the disease. Furthermore, relatives would be able to better support them if they had received more information on their situation. (Table 2 , quote 7) Psychosocial impact of unmet fertility- and menopause-related information needs When looking back, some of the women recognized they did not obtain sufficient fertility-related information. For some of them, this would have changed the choices they had made and they were still struggling with that. Not being able to complete their family brought grief. (Table 2 , quote 8 and 9) Furthermore, women reported feeling abandoned after treatment was finished. They were in need of guidance, also concerning their menopause-related symptoms. (Table 2 , quote 10) Priority lists At the end of each interview participants composed a priority list of the 5 most important information items concerning fertility or early menopause. Some women wrote down less than five items on their priority list, others noted multiple topics per rank. All priority lists were included in the analysis. The sum scores are shown in Table 3. Highest scores were allocated to a) fertility preservation options, b) the risk of menopause or infertility, and c) long term consequences of early menopause . Phase 3: exploration of needs and preferences of stakeholders regarding development and implementation of online information material We identified the needs and preferences of eighteen major stakeholders involved in breast cancer care, concerning information material about fertility and early menopause for young survivors. This led to a widely supported recommendation on nine aspects of design, development and implementation of information material: When should the information be offered? It is recommended that the information is provided at the moment of diagnosis when also fertility preservation options are being discussed. The information should be revisited when the primary treatment has been completed. Who should offer the information? The information should be offered to women by the oncologist, who has the most expertise on the topic, or by the breast cancer nurse, who is easily accessible to women, has time and attention for psychological issues, and is already frequently involved in follow up care. Should every premenopausal breast cancer patient receive the information? It is recommended that every women is asked if she is interested in the information material. The actual information material is only provided to women who express their interest. How detailed should the information be? In general, patients express the wish for very detailed information. A proportion of professionals is concerned regarding the feasibility of providing very detailed information, without a professional present to put things into perspective and to provide clarification about what applies to a particular patient. A balance should be found between these visions. In what format should the information be available? The information should be offered on a website, preferably supplemented with a small paper leaflet to hand over during a consultation, so that a woman can find the information online once she is at home. The information should also be available for women with a language-barrier. Should the information be personalized or interactive? It is recommended that women have the possibility to personalize the information by using a flowchart. This should help women with lower health literacy to understand the information that is applicable to them. Women who do not prefer personalization should be able to read all the available information. It is not recommended that the information material contains interactive options, since this requires a large investment in both time and finances. Instead, there could be referred to existing online communities. What attributes to trustworthiness of information for patients? To increase the sense of trustworthiness, the information material should mention the organizations that support the information, for example by placing their logo. Furthermore, these organizations should link to the information material on their website. Should the information be integrated in existing platforms? To maximize the number of women who are reached with the information material, it is helpful if many organizations refer to the information on their website. Hosting the information on an existing platform would be time and cost effective. Moreover, it is an advantage that the information can then be updated by a professional organization, instead of the research group. How should understandability of the information be ensured? It is recommended that the information material has a simple, professional design. Understandability can be enhanced by providing personal patient experiences, providing video explanations and by designing the information like a funnel, with the options to click for more detail if a woman wishes so. Phase 4: development and implementation of online information material Based on the results of phase 1-3 online information material was developed in collaboration with the nationwide website ( www.kanker.nl ) aimed at informing and supporting cancer patients. This website is supported by all major stakeholders who are involved in Dutch cancer care, namely the KWF Dutch Cancer Society, the Dutch Federation of Cancer Patient Organisations and the Netherlands Cancer Registry. By choosing for this collaboration, it became possible to benefit from the combination of the knowledge concerning information needs gained through this study, and the professional experience in information provision and wide reach of the cancer organization. This way, we were able to implement the information material concerning fertility and early menopause for breast cancer patients on the cancer organization website and ensured easy and wide access and regular updating of the information. Table 1 Sociodemographic characteristics of 18 breast cancer survivors (phase 2) Characteristic Number of participants (%) Time since diagnosis 2 years 1 (6) 6 (33) 11 (61) Socio-Economic Status (SES)* Low Medium High 9 (50) 5 (28) 4 (22) Level of education** Low Medium High 2 (11) 6 (33) 10 (56) Treatment received Surgery Radiotherapy Chemotherapy Hormone therapy Currently Immune therapy Currently 18 (100) 13 (72) 17 (94) 12 (67) 8 (44) 5 (28) 1 (6) Relationship status at time of diagnosis Married or committed relationship Single or widowed 15 (83) 3 (17) Already having children 14 (78) * According to zipcode area status scores were assigned by the Social Cultural Planbureau of the Netherlands, using the average income, percentage of low income households, percentage of lower vocations and unemployment rates. Low -1 and 1 ** Low (ISCED 0-2): No education, Basic education, Secondary education Medium (ISCED 3-4): Lower vocational education High (ISCED 5-8): Medium vocational education, university Table 2 Interview quotes Quote number Participant number Quote 1 8 ‘I brought it up myself with my oncologist, when discussing hormone therapy. I had prepared my questions in advance, because I felt like: This is about my fertility and this is very important to me.’ 2 12 ‘Very little can be found online. Of course I know that there are women who had breast cancer and became pregnant after that, often years later. But how that came to be? Did they have IVF or something like that before their treatment? (…) No one tells you how.’ 3 14 ‘I think it is very important that people can decide for themselves how deep they want to go into the subjects. Because you can fill a website with success stories of people who started a family after breast cancer. But for a lot of people that would be too painful.’ 4 10 ‘When you are ill, the first priority of your body and your head is: the cancer needs to go. You are not concerned about your fertility, because it does not fit into the picture (..) And I think, during that struggle for survival someone needs to remind you and occasionally tell you ‘this (fertility) matters too’’ 5 2 ‘What if I quit hormone therapy after three years (instead of five)? What are the consequences? Because it is a preventive treatment. So how much does my risk of breast cancer recurrence increase if I do this? And would it increase my chance of restored fertility?’ 6 13 ‘What are the consequences? You read about menopausal women that their bones are in worse shape, their hair thins out, skin quality declines. Does that mean that, compared to my mother, when I turn 70 years old I will look a lot older? Or my bones are much more fragile? I do not know and I can not find that anywhere.’ 7 11 ‘It (menopause) is not something that is visible, and not something you like to share with everyone. Who is proud of going through menopause? (…) So I think if your relatives or the people close to you know, that would make things easier. Because now they think ‘It is all over, we will celebrate and move on’. But it is not.’ 8 7 ‘I feel rather lonely. I am around 35 years old. My friends all have children. No one really understands me. (…) I wish I could share my feelings and emotions with someone who is in a similar situation, or to receive information from someone I have not found myself. ‘ 9 12 ‘That feeling remains. The breast cancer took that (having a second child) away from me. I understand that I had no choice, we needed to start chemotherapy quickly.’ 10 17 ‘I contacted the hospital myself because it was not endurable. I got mad over nothing. I was cold all the time but suddenly hot. I had no appetite but was gaining serious weight. And I was so unhappy. I had become a completely different person. They really should have informed and guided me on how to deal with that.’ Table 3 Priority lists for information items (n=18) Topic Sum score Fertility preservation options 54 Risk of menopause/infertility 49 Long term consequences of early menopause 37 Menopausal symptoms 25 Psychological impact of infertility/menopause 10 Self-care advices to improve overall health 9 Referral options 7 Treatment options of menopausal symptoms 7 Options for non-biological parenthood 6 Experiences of peers 5 Dealing with stress 4 All information items received a score based on their ranking on the specific priority list: first ranked 5 points, second one 4 points, third one 3 points, etc. Discussion In our study we investigated the fertility- and early menopause related information needs of young breast cancer survivors and their professionals through a qualitative study consisting of four study phases. Professionals in providing breast cancer care indicate that there are no guidelines concerning the provision of fertility and early menopause related information, but they address the topic based on their own experience. From a patient perspective it appeared that almost half of the women were not satisfied with the amount of information they received. Furthermore, they struggled to find reliable online information specific to their situation. They needed information on a large variety of topics. Most important topics were considered 1) fertility preservation options, 2) the risk of menopause or infertility, and 3) long term consequences of early menopause. Finally, after interviewing a wide range of stakeholders involved in breast cancer care, we executed their proposed design and implementation of information material, being on a nationwide website aiming at informing and supporting cancer patients. Breast cancer is the most frequently diagnosed cancer among women aged 15-39 years worldwide [ 1 ]. Counselling about fertility preservation takes place before the start of oncological treatment [ 22 – 24 ]. This is a phase in which women receive a lot of information in a short time frame. Together with the emotional stress that is caused by the cancer diagnosis, this impairs their ability to remember all information they receive. It is therefore important to provide high quality and easily accessible information on the risk of infertility not only at the time of diagnosis, but also after cancer cure. This way, women can revisit the information at home at the moment fertility related questions arise. Serving these information needs has a positive effect on women’s psychological wellbeing [ 8 – 11 ]. In the current study breast cancer survivors express unmet information needs and often report that they had to bring up the topic themselves during consultations, which is in accordance with previous studies [ 17 , 32 ]. It is established that young breast cancer patients appreciate information on fertility preservation options, contraception, impact of pregnancy on recurrence of breast cancer, impact of chemotherapy on the health of future children, menopausal symptoms and hormonal therapy [ 16 , 18 , 26 , 33 , 34 ]. In the current study participants agreed to this and further added information needs on self-care, long term consequences of early menopause, sexuality and information targeted at their relatives. Furthermore, they confirmed the need for information to take home, preferably a pamphlet referring to an online source [ 8 , 18 , 35 ]. The major strength of this study is its multi-phase design. We identified information needs from both, a professional and patient perspective. Furthermore, we consulted various stakeholders in providing breast cancer care concerning the design and implementation of the information material. In this way, we implemented a widely supported information tool that is nationally available for all professionals and patients. Our study has some limitations. It took a reasonable period to complete all study phases. However, this enabled us to approach the subject from all relevant perspectives and also to implement our recommendations on the nationwide website aimed at informing and supporting cancer patients, which is supported by all major stakeholders involved in Dutch cancer care. Since the start of this study, no comparable initiatives have been carried out, which ensures the relevance of our data to date. Furthermore, although we provided an extensive set of qualitative data, quantifying these results was not within the scope of the current study. It would be interesting for future research to provide quantitative data on the information needs of young breast cancer survivors. Finally, it is possible that there has been a selection bias concerning the professionals and patients who chose to participate in the study. This phenomenon is to be expected and further highlights the value of providing quantitative data in a larger population through future research. In conclusion, fertility- and early menopause related information needs during breast cancer survivorship have been identified and information material has been designed, developed and implemented. The material offers extensive information on these subjects, aimed at young breast cancer survivors. This way, we accommodated professionals in providing breast cancer care with an information tool that helps them meet the information needs and preferences of their patients. Future research is needed to evaluate the effect of the new information material and could also explore the added value of such an information tool for other cancer survivors. Declarations Ethics approval and consent to participate: Ethical approval of this study was proposed, but was not required according to the local research ethics committee (CMO Arnhem-Nijmegen file number 2015-1779). Written informed consent was obtained from all individual participants included in the study. Consent for publication: not applicable Availability of data and materials: not applicable Competing interests: the authors declare that they have no competing interests. Funding: Partial financial support was received from the Radboud Oncology Fund. Authors’ contributions: All authors contributed to the study conception and design. Data collection and analysis were performed by EMS. The first draft of the manuscript was written by EMS. All authors revised the manuscript critically for important intellectual content. All authors approved the final manuscript. References De Man AM, Rashedi A, Nelen W, Anazodo A, Rademaker A, De Roo S et.al. Female fertility in the cancer setting: availability and quality of online health information. Hum Fertil. 2020; 23:3,170-178. De Vos M, Smitz J, Woodruff TK. Fertility preservation in women with cancer. The Lancet. 2014;384:1302–1310. Goodwin PJ, Ennis M, Pritchard KI, Trudeau M, Hood N. Risk of menopause during the first year after breast cancer diagnosis. J Clin Oncol. 1999;17(8):2365–70. Partridge AH, Ruddy KJ. Fertility and adjuvant treatment in young women with breast cancer. Breast. 2007;16 Suppl 2:S175-81. Deshpande NA, Braun IM, Meyer FL. Impact of fertility preservation counseling and treatment on psychological outcomes among women with cancer: a systematic review. Cancer 2015;121: 3938–47. Lambertini M, Toss A, Azim H, Peccatori F, Ignatiadis M, Del Matro L, Demeestere I. Fertility and pregnancy issues in BRCA-mutated breast cancer patients. Cancer Treat Rev. 2017;59:61–70. Partridge AH, Gelber S, Peppercorn J, Sampson E, Knudsen K, Laufer M et.al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol. 2004;22(20):4174–83. Thewes B, Meiser B, Rickard J, Friedlander M. The fertility- and menopause related information needs of younger women with a diagnosis of breast cancer: A qualitative study. Psychooncology. 2003;9:500–11. Howard-Anderson J, Ganz PA, Bower JE, Stanton AL. Quality of life, fertility concerns, and behavioral health outcomes in younger breast cancer survivors: a systematic review. J Natl Cancer Inst. 2012;104(5):386–405. Sobota A, Ozakinci G. Fertility and parenthood issues in young female cancer patients – a systematic review. J Cancer Surviv. 2014;8(4):707–21. Gorman JR, Su HI, Roberts SC, Dominick SA, Malcarne VL. Experiencing reproductive concerns as a female cancer survivor is associated with depression. Cancer. 2015;121(6):935–42. Canada AL, Schover LR. The psychosocial impact of interrupted childbearing in long-term female cancer survivors. Psychooncology. 2012;21(2):134–43. Duffy C, Allen S. Medical and psychosocial aspects of fertility after cancer. Cancer J. 2009;15(1):27–33. Thewes B, Butow P, Girgis A, Pendlebury S. The psychosocial needs of breastcancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology. 2004; 13(3):177–89. Takahashi M. Psychosocial distress among young breast cancer survivors: implications for healthcare providers. Breast Cancer. 2014;21(6):664–9. Peate M, Meiser B, Hickey M, Friedlander M. The fertility related concerns, needs and preferences of younger women with breast cancer: a systematic review. Breast Cancer Res Treat. 2009;116(2):215–23. Ben Charif A, Bouhnik AD, Rey D, Provansal M, Courbiere B, Spire B et.al. Satisfaction with fertility- and sexuality-related information in young women with breast cancer – ELIPPSE40 cohort. BMC Cancer. 2015;15:572. Garvelink MM, ter Kuile MM, Bakker RM, Geense WJ, Jenninga E, Louwe LA et.al. Women’s experiences with information provision and deciding about fertility preservation in the Netherlands: ‘satisfaction in general, but unmet needs’. Health Expect. 2015;18(5):956–68. Mody DP, Hulugalle A, Su H, Gorman J. Contraception concerns, utilization and counseling needs of women with a history of breast cancer: a qualitative study. Int J Womens Health. 2017;9:507–12. Gorman JR, Usita PM, Madlensky L, Pierce JP. Young breast cancer survivors: their perspectives on treatment decisions and fertility concerns. Cancer Nurs. 2011;34(1):32–40. Letourneau JM, Ebbel EE, Katz PP, Katz A, AI WZ, Chien AJ et.al. Pretreatment fertility counseling en fertility preservation improve quality of life in reproductive age women with cancer. Cancer. 2012;1188(6):1710–7. Dutch breast cancer guideline. https://richtlijnendatabase.nl/richtlijn/borstkanker/algemeen.html . Accessed 21-08-2021. Runowicz CL, Henry N, Henry K, Mackey H, Cowens-Alvarado R, Cannady R et.al. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. J Clin Oncol. 2016;34(6): 611–35. Female fertility preservation. Guideline of the European Society of Human Reproduction and Embryology. 2020 ESHRE female fertility preservation guideline development group. Cruz MR, Prestes JC, Gimenes DL, Fanelli MF. Fertility preservation in women with breast cancer undergoing adjuvant chemotherapy: a systematic review. Fertil Steril. 2010;94(1):138–43. Connell S, Patterson C, Newman B. A qualitative analysis of reproductive issues raised by young Australian women with breast cancer. Health Care Women Int. 2006;27(1):94–110. NVOG. Fertiliteitsbehoud bij vrouwen met kanker. 2016. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Adm Policy Ment Health. 2015;42(5):533–544. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York, USA: Aldine De Gruyter, 1967. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101. Denzin N. Sociological Methods: A Sourcebook. Piscataway, USA: AldineTransaction, 5th edn , 2006. Ussher JM, Parton C, Perz J. Need for information, honesty and respect: patient perspectives on health care professionals communication about cancer and fertility. Reprod Health. 2018;15(1):2. Thewes B, Meiser B, Taylor A, Phillips KA, Pendlebury S, Capp A, et.al. Fertility- and menopause-related information needs of younger women with a diagnosis of early breast cancer. J Clin Oncol. 2005;23(22):5155–65. Goncalces V, Sehovic I, Quinn G. Childbearing attitudes and decisions of young breast cancer survivors: a systematic review. Hum Reprod Update. 2014;20(2):279–92. Lee RJ, Wakefield A, Foy S, Howell SJ, Wardley AM, Armstrong AC. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psychooncology. 2011;20(10):1044–52. Supplementary Files Appendix.docx COREQchecklist.docx Cite Share Download PDF Status: Under Review Version 1 posted Reviews received at journal 15 Feb, 2022 First submitted to journal 25 Nov, 2021 Editorial decision: Minor revision 27 Oct, 2021 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-970747","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":84131070,"identity":"8f5b7193-c38c-44f4-9b16-d7f587107f84","order_by":0,"name":"Ellen Marie Sparidaens","email":"data:image/png;base64,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","orcid":"https://orcid.org/0000-0003-1034-2891","institution":"Radboudumc","correspondingAuthor":true,"prefix":"","firstName":"Ellen","middleName":"Marie","lastName":"Sparidaens","suffix":""},{"id":84131071,"identity":"bd34e596-d990-4d8a-8a2f-37b8fff84b78","order_by":1,"name":"Catharina CM Beerendonk","email":"","orcid":"","institution":"Radboudumc","correspondingAuthor":false,"prefix":"","firstName":"Catharina","middleName":"CM","lastName":"Beerendonk","suffix":""},{"id":84131072,"identity":"98148f23-441d-4f76-bf74-385af50b3bb4","order_by":2,"name":"Kathrin Fleischer","email":"","orcid":"","institution":"TFP Center of Reproductive Medicine","correspondingAuthor":false,"prefix":"","firstName":"Kathrin","middleName":"","lastName":"Fleischer","suffix":""},{"id":84131073,"identity":"51605915-9546-4f10-ae6e-536cae63f233","order_by":3,"name":"Willianne LDM Nelen","email":"","orcid":"","institution":"Radboudumc","correspondingAuthor":false,"prefix":"","firstName":"Willianne","middleName":"LDM","lastName":"Nelen","suffix":""},{"id":84131074,"identity":"db6b70a6-7784-44a0-8c0e-597b2d5702b3","order_by":4,"name":"Didi DM Braat","email":"","orcid":"","institution":"Radboudumc","correspondingAuthor":false,"prefix":"","firstName":"Didi","middleName":"DM","lastName":"Braat","suffix":""},{"id":84131075,"identity":"70346bb0-dbf2-4078-ad57-e8ef6053a641","order_by":5,"name":"Rosella PMG Hermens","email":"","orcid":"","institution":"Radboudumc IQ healthcare","correspondingAuthor":false,"prefix":"","firstName":"Rosella","middleName":"PMG","lastName":"Hermens","suffix":""}],"badges":[],"createdAt":"2021-10-15 10:47:49","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-970747/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-970747/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":18341008,"identity":"bca896c2-1673-4c96-a0d9-35927cb879b8","added_by":"auto","created_at":"2022-02-17 21:26:11","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":596027,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-970747/v1/5136c03f-8bdd-4f64-9cc7-b71c27f1b4e8.pdf"},{"id":18341005,"identity":"149caa2b-65e8-4b1c-8654-24ced8ffa4fc","added_by":"auto","created_at":"2022-02-17 21:26:03","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":14883,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix.docx","url":"https://assets-eu.researchsquare.com/files/rs-970747/v1/1cacb12da4d310d9aea57203.docx"},{"id":18341006,"identity":"8430d340-5429-47aa-9e01-26382a40b81d","added_by":"auto","created_at":"2022-02-17 21:26:03","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":17270,"visible":true,"origin":"","legend":"","description":"","filename":"COREQchecklist.docx","url":"https://assets-eu.researchsquare.com/files/rs-970747/v1/9912c0185f62b7afd8b923e7.docx"}],"financialInterests":"","formattedTitle":"\u003cp\u003eFertility- and early menopause related information needs of young breast cancer survivors\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eBreast cancer is the most common cancer in women aged 15-39 years worldwide [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Treatment can be gonadotoxic, leading to temporary or permanent infertility, or premature ovarian insufficiency (POI) later in life [\u003cspan additionalcitationids=\"CR3\" citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Furthermore, young women with a hormone-positive tumor are often treated with adjuvant antihormonal treatment for years after their primary treatment has finished; a period in which they are not able nor allowed to conceive. Whether fertility is regained after the completion of primary and adjuvant treatment depends on factors such as age, type of treatment and cumulative dose of chemotherapy received [\u003cspan additionalcitationids=\"CR3\" citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDue to the social trend of women having children later in life, a growing proportion of women diagnosed with breast cancer does not have completed their family yet [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Moreover, major advances in oncology practice over the years have improved breast cancer survival rates. This contributes to the fact that approximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finished treatment [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The majority of them experiences concerns about the possibility to be infertile after cancer treatment [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. These concerns are often associated with depressive symptoms and a diminished quality of life among young cancer survivors [\u003cspan additionalcitationids=\"CR9 CR10\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. This occurs not only shortly after diagnosis and treatment, but has been found to last years beyond the completion of treatment [\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Loss of fertility can be experienced as painful as the cancer diagnosis itself [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eYounger premenopausal breast cancer survivors report a greater need for information and psychosocial guidance compared to older postmenopausal women regarding topics like fertility and sexuality [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. Premenopausal women often feel that the information they have received is insufficient or conflicting [\u003cspan additionalcitationids=\"CR17\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Professionals do not always feel the necessity of discussing fertility, and women often do not feel encouraged to ask questions about it [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. This particularly appears to be the case for women who are single at the time of their diagnosis and women who have a poor prognosis [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e]. However, receiving information on fertility is important to all premenopausal breast cancer patients [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Counseling about the risk of infertility prior to cancer treatment has been proven to significantly improve quality of life after cancer treatment [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTherefore, current international breast cancer guidelines focus on informing breast cancer patients on the possibility of reduced fertility prior to treatment [\u003cspan additionalcitationids=\"CR23\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. This is by all means important, because this is the moment a woman needs to be aware of the risks of various treatments for her fertility and the different available fertility preservation options, in order to make a well-informed treatment decision [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan additionalcitationids=\"CR23 CR24\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. However, concerns about fertility may also arise after cure for cancer in both women who were and were not previously concerned about their fertility [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Therefore, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual as well. Since current guidelines lack any recommendations on which information should be provided to breast cancer survivors and how this should be offered [\u003cspan additionalcitationids=\"CR23\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], the present study was designed. Our research question was: what are the fertility- and early menopause related information needs of young breast cancer survivors from both professionals\u0026rsquo; and patients\u0026rsquo; perspectives and how should this information be provided?\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eThe design of this qualitative study, performed in the Netherlands, consisted of four phases: 1) identification of relevant topics concerning fertility- and early menopause related information from a professional perspective, 2) identification of fertility- and early menopause related information needs from a patient perspective, 3) exploration of needs and preferences of stakeholders involved in breast cancer care regarding development and implementation of online information material, 4) development and implementation of the information. Ethical approval of this study was proposed, but was not required according to the local research ethics committee (CMO Arnhem-Nijmegen file number 2015-1779). All participants signed for informed consent. The COREQ checklist guided the study conduct and reporting.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eSetting\u003c/h2\u003e \u003cp\u003e Breast cancer care in the Netherlands is provided in university hospitals, large non-university teaching hospitals and small non-teaching hospitals. Women are primarily diagnosed and treated by a medical oncologist and/or a surgical oncologist. Treatment is multidisciplinary and can also involve a radiation oncologist, radiologist, pathologist, breast cancer nurse, clinical geneticist, plastic surgeon, gynecologist and a psychologist. The breast cancer nurse coordinates the treatment, is easily accessible for the women, discusses many practical and emotional issues with them and also delivers a part of the follow up care. Current Dutch guidelines state that all women should be informed about the risk of infertility prior to their treatment and that they should be referred to a specialist in fertility preservation if desired [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e], although implementation of this guideline is still inadequate. The specialist in fertility preservation provides information about the risk of infertility or POI and provides counseling about fertility preservation options. A potential delay in breast cancer treatment is taken into account and discussed with the oncologist. The oncologist is supposed to revisit the subject at the start of follow-up and refer women to a gynecologist again if they have questions [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e]. Fertility preservation is centralized in In Vitro Fertilization-centers in the Netherlands.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003ePhase 1: identification of relevant topics from a professional perspective\u003c/h2\u003e \u003cdiv id=\"Sec6\" class=\"Section3\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eIn this phase, the information needs from a professional perspective were identified. Thirteen semi-structured interviews were conducted with a panel of professionals in providing breast cancer care, consisting of five medical oncologists, two surgical oncologists, two gynecologists specialized in fertility preservation, three breast cancer nurses and one specialist in adolescent and young adult cancer care (AYA). The experts originated from two university hospitals and three large teaching hospitals throughout the Netherlands via purposeful sampling [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. The interviews were preferably conducted face to face, otherwise by phone.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eAll interviews were conducted by the first author (EMS) between January and June 2016. The topic guide for the interviews was based on a PubMed search on the terms \u0026lsquo;information\u0026rsquo;, \u0026lsquo;fertility\u0026rsquo;, \u0026lsquo;menopause\u0026rsquo; and \u0026lsquo;breast cancer\u0026rsquo;. Items regarding fertility- and menopause related information for women diagnosed with breast cancer were included in the topic guide. Experts were asked about their experiences concerning fertility and early menopause with women before, during and after breast cancer treatment. For example: which information do they offer women concerning these topics? What questions do women ask? Is there information material available in writing or online? The topic guide is included in Appendix A.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eInterviews were recorded and transcribed verbatim. Relevant items concerning fertility or early menopause were identified by EMS, which was supervised by WN. No discrepancies arose during analysis. All items that were identified, were included in the topic guide for the interviews with breast cancer survivors (phase 2).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003ePhase 2: identification of information needs from a patient perspective\u003c/h2\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eIn this phase the information needs from a patient perspective were identified, using semi-structured interviews. Eligible for inclusion were young female breast cancer survivors, aged 20-45 years old, who had completed their initial treatment, i.e. surgery, chemotherapy and/or radiation therapy, and were currently in their follow up period in one of two participating clinics, i.e. a university hospital and a large teaching hospital. Some women still received antihormonal treatment. Women were consecutively invited to participate during follow up appointments with their oncologist or breast cancer nurse and received written information about the study. Women who agreed to be informed, were contacted by the researcher a few days later, to see if they had further questions and if they wanted to participate. The number of participants was determined by data saturation [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. After reaching data saturation, two additional interviews were conducted to confirm saturation.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section3\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eThe interviews were conducted by the female first author (EMS, MD) between April and December 2017. The interviewer was working as a PhD student and had previously received training in qualitative research techniques and also had experience with interviewing techniques. She was not involved in the participants treatment. Interviews were preferably conducted face-to-face in the clinic, but if this was not possible, they were conducted by phone. Each interview started with an explanation of the research goals. The topic guide of the interviews was based on the results of phase 1, i.e. the interviews with the expert panel. It contained open questions, for example on the information women received on fertility and early menopause, current information needs, and online information seeking behavior. Women were encouraged to elaborate on their answers. The topic guide was flexible to allow for new topics that were brought up by participants. The topic guide is included in Appendix B. At the end of each interview women completed a short sociodemographic questionnaire. They were also asked to compose a priority list with a top 5 of most important items concerning fertility- and early menopause related information.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eInterviews were recorded and transcribed verbatim. Field notes were made by the researcher. Items regarding fertility- or menopause related information were coded using Atlas.ti (version 8.1.28). Thematic analysis was used to identify themes and sub-themes from dominant concepts in the raw data [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Cross-case analysis was conducted, where data from all participants were combined rather than analyzed as individual cases. A constant comparative method was used to interpret the data, continuously reviewing the transcripts [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. All transcripts were coded individually by the interviewer and a research assistant (female medical student) to obtain investigator triangulation [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]. Emerging codes were discussed until consensus was reached. If consensus would not be achieved a third researcher (WN) would be consulted. This turned out not to be necessary.\u003c/p\u003e \u003cp\u003eAnalysis of the priority lists included all items that were noted concerning fertility or early menopause. These items received a score based on their ranking on the specific priority list (first ranked 5 points, second one 4 points, third one 3 points, etc.).\u003c/p\u003e \u003cp\u003e \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003ePhase 3: exploration of needs and preferences of stakeholders regarding development and implementation of online information material\u003c/span\u003e \u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section3\"\u003e \u003ch2\u003eParticipants and data collection\u003c/h2\u003e \u003cp\u003eThe goal of this phase was to identify the needs and preferences of major stakeholders involved in breast cancer care, concerning the design, development and national implementation of information material about fertility and early menopause for young breast cancer survivors. Eighteen stakeholders were interviewed, representing eight patient organizations, seven professional associations in the field of breast cancer care and three medical insurance companies. They were asked about their view on nine aspects of design, development and implementation of the information material which were compiled by the research team:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eWhen should the information be offered?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eWho should offer the information?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eShould every premenopausal breast cancer patient receive the information?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eHow detailed should the information be?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eIn what format should the information be available?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eShould the information be personalized or interactive?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eWhat attributes to trustworthiness of information for patients?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eShould the information be integrated in existing platforms?\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eHow should understandability of the information be ensured?\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eThe interviews were conducted by a research assistant. They were recorded and transcribed verbatim.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eData analysis\u003c/h2\u003e \u003cp\u003eThe research assistant analyzed the interviews, which was supervised by the first author (EMS). For each of the nine aspects described earlier, different scenarios for implementation were extracted. The scenarios were weighed by both researchers based on six criteria:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003ePatient preferences\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eExpert preferences\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eFinancial investment\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eTime investment\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eExisting literature\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eThe proportion of patients that is being reached in a scenario\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eThis eventually led to the conclusion of a widely supported recommendation concerning the design, development and national implementation of the information material.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003ePhase 4: development and implementation of online information material\u003c/h2\u003e \u003cp\u003eIn phase 1 and 2 the information needs from both a professional and a patient perspective were identified. Phase 3 led to the conclusion of a widely supported recommendation concerning the design, development and national implementation of the information material. Finally, in phase 4 the information material was developed and implemented based on the results of the previous phases. The information material was developed by the researchers in collaboration with stakeholders interviewed in phase 3. There were several rounds of feedback from both professionals and patients, before the information material was implemented.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003ch2\u003ePhase 1: identification of relevant topics from a professional perspective\u003c/h2\u003e\n\u003cp\u003eOut of the thirteen interviews with professionals in providing breast cancer care, eleven interviews were face to face and two interviews were conducted by phone. The duration of the interviews ranged from 23 to 44 minutes. All relevant information items concerning fertility or early menopause that were identified, were included in the topic guide for the interviews with breast cancer survivors, which were performed in phase 2. Data saturation was reached after the eleventh interview, i.e. no new information items could be added to the topic guide. The topic guide is presented in Appendix B.\u003c/p\u003e\n\u003cp\u003eFindings originating from the interviews with professionals were that they state that the consequences of breast cancer treatment on fertility and possible early menopause were mainly discussed before the start of treatment and only occasionally during and after treatment. Professionals feel like it is their task to initiate the conversation on these topics, since they feel that women struggle to address these topics themselves. Professionals indicate that there are no guidelines on when to discuss these topics, but they do so based on their own intuition. During breast cancer treatment and during the follow up period, both medical and surgical oncologists say that they receive very little questions on fertility and possible early menopause. On the other hand, breast cancer nurses do say that they are asked about these topics by patients, although they feel that they don\u0026rsquo;t possess the knowledge to properly answer these questions. Both breast cancer nurses and surgeons indicate that they feel the oncologist is the designated professional to elaborate on these topics with patients and survivors.\u003c/p\u003e\n\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e\n\u003ch2\u003ePhase 2: identification of information needs from a patient perspective\u003c/h2\u003e\n\u003cdiv id=\"Sec19\" class=\"Section3\"\u003e\n\u003ch2\u003eParticipants\u003c/h2\u003e\n\u003cp\u003eA total of eighteen women participated in an interview. Data saturation was reached at the sixteenth interview. Two additional interviews yielded no new information. Duration of the interviews ranged from 20 to 60 minutes. Mean age at breast cancer diagnosis was 35,5 years old, ranging from 21 to 44 years old. Time since diagnosis varied from nine months to twelve years. Most women had been treated with surgery and chemotherapy. Eight out of eighteen participants still had a future childbearing wish at the time of their diagnosis, five of them had chosen fertility preservation. Sociodemographic characteristics are presented in Table \u003cspan class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec20\" class=\"Section3\"\u003e\n\u003ch2\u003eInterview results\u003c/h2\u003e\n\u003cp\u003eSeveral information themes were identified from the interview data and are consecutively described below. Quotes from the interviews are presented in Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec21\" class=\"Section3\"\u003e\n\u003ch2\u003eCounseling on possible infertility and early menopause\u003c/h2\u003e\n\u003cp\u003eThe risk of infertility and early menopause was discussed with most women at the time of their diagnosis by their medical oncologist, surgical oncologist or breast cancer nurse. Most important topics were the risk of diminished fertility, fertility preservation, chemotherapy-induced menopause, contraception and hereditariness of breast cancer. However, almost half of the women were not satisfied with the amount of information they received and four of them reported not having received any information on the subject.\u003c/p\u003e\n\u003cp\u003eAfter completion of their initial treatment, the majority of women report having brought up the topic themselves because they did not feel like they received enough information. They preferred discussing the topic with their breast cancer nurse, medical oncologist or surgical oncologist (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 1). Most important topics at this point in time were the current fertility status, menopause related symptoms and their treatment, whether to start hormone therapy and contraceptive advice. Only one woman was referred to a gynecologist.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec22\" class=\"Section3\"\u003e\n\u003ch2\u003eAvailability and design of information material\u003c/h2\u003e\n\u003cp\u003eMany participants reported to have consulted other healthcare professionals for support and specialized knowledge, for example their general practitioner, a physical therapist, gynecologist, psychologist or an orthomolecular physician. Furthermore, most women searched for infertility and early menopause-related information online. Search terms that were often used were self-care advices, fertility after breast cancer, menopausal symptoms, side-effects of cancer treatment, sexuality and psychological matters. Women mainly relied on the website of their hospital and the website of the Dutch Breast cancer Association (BVN) to assess reliability of online information. They often described struggling to find reliable information specific to their situation as a young premenopausal woman with breast cancer, or young breast cancer survivor, since most information deemed generic or unreliable to them. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 2)\u003c/p\u003e\n\u003cp\u003eWomen reported to be in need of written information on fertility and early menopause. They wanted to prepare themselves for hospital visits and read the information again afterwards. This would give them a feeling of being in control and being able to acquire information in their own pace. The preferred medium would be a website. The use of a short folder or business card with some information highlights and the link to the website was recommended. Women suggested that a website should use a filter, for example by age or stage of treatment, or use chapters or hyperlinks in the text to avoid women from feeling overwhelmed by the amount of information. Women felt that the information should be both concise and detailed, factual and easily accessible. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 3)\u003c/p\u003e\n\u003cp\u003eMost participants thought that the information should be developed in collaboration with patient organizations and various hospitals, so that the information is tailored to patient\u0026rsquo;s needs, perceived as reliable and easy to find. Many participants would like to be able to ask questions online, preferably to health care professionals. Some women would like a forum to share experiences with peers. Other women were concerned about a forum, worrying that it would be easily contaminated with overly dramatic stories and unconfirmed claims.\u003c/p\u003e\n\u003cp\u003eParticipants believed that every premenopausal woman who is diagnosed with breast cancer should receive information about fertility and the risk of early menopause, regardless of their age and marital status. Furthermore, they indicated that these topics should be revisited throughout follow up appointments, as they feel their information needs change throughout time. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 4)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec23\" class=\"Section3\"\u003e\n\u003ch2\u003eInformation topics: fertility\u003c/h2\u003e\n\u003cp\u003eWomen are in need of personalized information that is specific to their situation as a young woman with a diagnosis of breast cancer. Women have questions such as: When should I give up hope of my menstruation cycle returning? When would my body be ready for pregnancy? And when are the risks minimal? Does a pregnancy increase the chance of breast cancer recurrence? Is it safe to stop hormone therapy to try and conceive? (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 5)\u003c/p\u003e\n\u003cp\u003eFurthermore, women have questions like: Should I be using contraception? If I want to conceive, should we try ourselves? For how long? When can I approach a fertility specialist? When can I use cryopreserved eggs or embryos? Can my child be healthy? Is my chance of a miscarriage increased? Will I be able to breastfeed? What are the alternatives to biological parenthood?\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec24\" class=\"Section3\"\u003e\n\u003ch2\u003eInformation topics: early menopause\u003c/h2\u003e\n\u003cp\u003eWomen indicated that they wanted to understand more about the physiology of menopause. They wanted to learn about hormonal changes and the impact on their body. The majority of the participants had experienced or were still experiencing menopause related symptoms. They were in need of information on possible treatment and self-care advices, such as nutrition and exercise. Furthermore, they wanted information on the long term consequences of early menopause. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 6)\u003c/p\u003e\n\u003cp\u003eWomen wished for information that also targets their relatives. They felt like their relatives are also in need of support in dealing with the disease. Furthermore, relatives would be able to better support them if they had received more information on their situation. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 7)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec25\" class=\"Section3\"\u003e\n\u003ch2\u003ePsychosocial impact of unmet fertility- and menopause-related information needs\u003c/h2\u003e\n\u003cp\u003eWhen looking back, some of the women recognized they did not obtain sufficient fertility-related information. For some of them, this would have changed the choices they had made and they were still struggling with that. Not being able to complete their family brought grief. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 8 and 9)\u003c/p\u003e\n\u003cp\u003eFurthermore, women reported feeling abandoned after treatment was finished. They were in need of guidance, also concerning their menopause-related symptoms. (Table \u003cspan class=\"InternalRef\"\u003e2\u003c/span\u003e, quote 10)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec26\" class=\"Section3\"\u003e\n\u003ch2\u003ePriority lists\u003c/h2\u003e\n\u003cp\u003eAt the end of each interview participants composed a priority list of the 5 most important information items concerning fertility or early menopause. Some women wrote down less than five items on their priority list, others noted multiple topics per rank. All priority lists were included in the analysis. The sum scores are shown in Table 3. Highest scores were allocated to a) fertility preservation options, b) the risk of menopause or infertility, and c) long term consequences of early menopause .\u003c/p\u003e\n\u003cp\u003e\u003cspan class=\"Underline\"\u003ePhase 3: exploration of needs and preferences of stakeholders regarding development and implementation of online information material\u003c/span\u003e\u003c/p\u003e\n\u003cp\u003eWe identified the needs and preferences of eighteen major stakeholders involved in breast cancer care, concerning information material about fertility and early menopause for young survivors. This led to a widely supported recommendation on nine aspects of design, development and implementation of information material:\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec27\" class=\"Section3\"\u003e\n\u003ch2\u003eWhen should the information be offered?\u003c/h2\u003e\n\u003cp\u003eIt is recommended that the information is provided at the moment of diagnosis when also fertility preservation options are being discussed. The information should be revisited when the primary treatment has been completed.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec28\" class=\"Section3\"\u003e\n\u003ch2\u003eWho should offer the information?\u003c/h2\u003e\n\u003cp\u003eThe information should be offered to women by the oncologist, who has the most expertise on the topic, or by the breast cancer nurse, who is easily accessible to women, has time and attention for psychological issues, and is already frequently involved in follow up care.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec29\" class=\"Section3\"\u003e\n\u003ch2\u003eShould every premenopausal breast cancer patient receive the information?\u003c/h2\u003e\n\u003cp\u003eIt is recommended that every women is asked if she is interested in the information material. The actual information material is only provided to women who express their interest.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec30\" class=\"Section3\"\u003e\n\u003ch2\u003eHow detailed should the information be?\u003c/h2\u003e\n\u003cp\u003eIn general, patients express the wish for very detailed information. A proportion of professionals is concerned regarding the feasibility of providing very detailed information, without a professional present to put things into perspective and to provide clarification about what applies to a particular patient. A balance should be found between these visions.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec31\" class=\"Section3\"\u003e\n\u003ch2\u003eIn what format should the information be available?\u003c/h2\u003e\n\u003cp\u003eThe information should be offered on a website, preferably supplemented with a small paper leaflet to hand over during a consultation, so that a woman can find the information online once she is at home. The information should also be available for women with a language-barrier.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec32\" class=\"Section3\"\u003e\n\u003ch2\u003eShould the information be personalized or interactive?\u003c/h2\u003e\n\u003cp\u003eIt is recommended that women have the possibility to personalize the information by using a flowchart. This should help women with lower health literacy to understand the information that is applicable to them. Women who do not prefer personalization should be able to read all the available information. It is not recommended that the information material contains interactive options, since this requires a large investment in both time and finances. Instead, there could be referred to existing online communities.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec33\" class=\"Section3\"\u003e\n\u003ch2\u003eWhat attributes to trustworthiness of information for patients?\u003c/h2\u003e\n\u003cp\u003eTo increase the sense of trustworthiness, the information material should mention the organizations that support the information, for example by placing their logo. Furthermore, these organizations should link to the information material on their website.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec34\" class=\"Section3\"\u003e\n\u003ch2\u003eShould the information be integrated in existing platforms?\u003c/h2\u003e\n\u003cp\u003eTo maximize the number of women who are reached with the information material, it is helpful if many organizations refer to the information on their website. Hosting the information on an existing platform would be time and cost effective. Moreover, it is an advantage that the information can then be updated by a professional organization, instead of the research group.\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec35\" class=\"Section3\"\u003e\n\u003ch2\u003eHow should understandability of the information be ensured?\u003c/h2\u003e\n\u003cp\u003eIt is recommended that the information material has a simple, professional design. Understandability can be enhanced by providing personal patient experiences, providing video explanations and by designing the information like a funnel, with the options to click for more detail if a woman wishes so.\u003c/p\u003e\n\u003c/div\u003e\n\u003c/div\u003e\n\u003cdiv id=\"Sec36\" class=\"Section2\"\u003e\n\u003ch2\u003ePhase 4: development and implementation of online information material\u003c/h2\u003e\n\u003cp\u003eBased on the results of phase 1-3 online information material was developed in collaboration with the nationwide website (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003ca href=\"http://www.kanker.nl\" target=\"_blank\"\u003ewww.kanker.nl\u003c/a\u003e\u003c/span\u003e\u003c/span\u003e) aimed at informing and supporting cancer patients. This website is supported by all major stakeholders who are involved in Dutch cancer care, namely the KWF Dutch Cancer Society, the Dutch Federation of Cancer Patient Organisations and the Netherlands Cancer Registry. By choosing for this collaboration, it became possible to benefit from the combination of the knowledge concerning information needs gained through this study, and the professional experience in information provision and wide reach of the cancer organization. This way, we were able to implement the information material concerning fertility and early menopause for breast cancer patients on the cancer organization website and ensured easy and wide access and regular updating of the information.\u003c/p\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Tab1\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003eSociodemographic characteristics of 18 breast cancer survivors (phase 2)\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003e\u003cem\u003eCharacteristic\u003c/em\u003e\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003e\u003cem\u003eNumber of participants (%)\u003c/em\u003e\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTime since diagnosis\u003c/p\u003e\n\u003cp\u003e\u0026lt; 12 months\u003c/p\u003e\n\u003cp\u003e12 \u0026ndash; 48 months\u003c/p\u003e\n\u003cp\u003e\u0026gt; 2 years\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e1 (6)\u003c/p\u003e\n\u003cp\u003e6 (33)\u003c/p\u003e\n\u003cp\u003e11 (61)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSocio-Economic Status (SES)*\u003c/p\u003e\n\u003cp\u003eLow\u003c/p\u003e\n\u003cp\u003eMedium\u003c/p\u003e\n\u003cp\u003eHigh\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e9 (50)\u003c/p\u003e\n\u003cp\u003e5 (28)\u003c/p\u003e\n\u003cp\u003e4 (22)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eLevel of education**\u003c/p\u003e\n\u003cp\u003eLow\u003c/p\u003e\n\u003cp\u003eMedium\u003c/p\u003e\n\u003cp\u003eHigh\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e2 (11)\u003c/p\u003e\n\u003cp\u003e6 (33)\u003c/p\u003e\n\u003cp\u003e10 (56)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTreatment received\u003c/p\u003e\n\u003cp\u003eSurgery\u003c/p\u003e\n\u003cp\u003eRadiotherapy\u003c/p\u003e\n\u003cp\u003eChemotherapy\u003c/p\u003e\n\u003cp\u003eHormone therapy\u003c/p\u003e\n\u003cp\u003eCurrently\u003c/p\u003e\n\u003cp\u003eImmune therapy\u003c/p\u003e\n\u003cp\u003eCurrently\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e18 (100)\u003c/p\u003e\n\u003cp\u003e13 (72)\u003c/p\u003e\n\u003cp\u003e17 (94)\u003c/p\u003e\n\u003cp\u003e12 (67)\u003c/p\u003e\n\u003cp\u003e8 (44)\u003c/p\u003e\n\u003cp\u003e5 (28)\u003c/p\u003e\n\u003cp\u003e1 (6)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRelationship status at time of diagnosis\u003c/p\u003e\n\u003cp\u003eMarried or committed relationship\u003c/p\u003e\n\u003cp\u003eSingle or widowed\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e15 (83)\u003c/p\u003e\n\u003cp\u003e3 (17)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eAlready having children\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e14 (78)\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e* According to zipcode area status scores were assigned by the Social Cultural Planbureau of the Netherlands, using the\u003c/p\u003e\n\u003cp\u003eaverage income, percentage of low income households, percentage of lower vocations and unemployment rates.\u003c/p\u003e\n\u003cp\u003eLow \u0026lt;-1; Medium \u0026gt; -1 and \u0026lt; 1; High \u0026gt; 1\u003c/p\u003e\n\u003cp\u003e** Low (ISCED 0-2): No education, Basic education, Secondary education\u003c/p\u003e\n\u003cp\u003eMedium (ISCED 3-4): Lower vocational education\u003c/p\u003e\n\u003cp\u003eHigh (ISCED 5-8): Medium vocational education, university\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Tab2\" border=\"1\"\u003e\u003ccaption\u003e\n\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\n\u003cdiv class=\"CaptionContent\"\u003e\n\u003cp\u003eInterview quotes\u003c/p\u003e\n\u003c/div\u003e\n\u003c/caption\u003e\n\u003cthead\u003e\n\u003ctr\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eQuote number\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eParticipant number\u003c/p\u003e\n\u003c/th\u003e\n\u003cth align=\"left\"\u003e\n\u003cp\u003eQuote\u003c/p\u003e\n\u003c/th\u003e\n\u003c/tr\u003e\n\u003c/thead\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e1\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e8\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;I brought it up myself with my oncologist, when discussing hormone therapy. I had prepared my questions in advance, because I felt like: This is about my fertility and this is very important to me.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e2\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e12\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;Very little can be found online. Of course I know that there are women who had breast cancer and became pregnant after that, often years later. But how that came to be? Did they have IVF or something like that before their treatment? (\u0026hellip;) No one tells you how.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e3\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e14\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;I think it is very important that people can decide for themselves how deep they want to go into the subjects. Because you can fill a website with success stories of people who started a family after breast cancer. But for a lot of people that would be too painful.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e4\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e10\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;When you are ill, the first priority of your body and your head is: the cancer needs to go. You are not concerned about your fertility, because it does not fit into the picture (..) And I think, during that struggle for survival someone needs to remind you and occasionally tell you \u0026lsquo;this (fertility) matters too\u0026rsquo;\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e5\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e2\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;What if I quit hormone therapy after three years (instead of five)? What are the consequences? Because it is a preventive treatment. So how much does my risk of breast cancer recurrence increase if I do this? And would it increase my chance of restored fertility?\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e6\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e13\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;What are the consequences? You read about menopausal women that their bones are in worse shape, their hair thins out, skin quality declines. Does that mean that, compared to my mother, when I turn 70 years old I will look a lot older? Or my bones are much more fragile? I do not know and I can not find that anywhere.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e7\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e11\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;It (menopause) is not something that is visible, and not something you like to share with everyone. Who is proud of going through menopause? (\u0026hellip;) So I think if your relatives or the people close to you know, that would make things easier. Because now they think \u0026lsquo;It is all over, we will celebrate and move on\u0026rsquo;. But it is not.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e8\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e7\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;I feel rather lonely. I am around 35 years old. My friends all have children. No one really understands me. (\u0026hellip;) I wish I could share my feelings and emotions with someone who is in a similar situation, or to receive information from someone I have not found myself. \u0026lsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e9\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e12\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;That feeling remains. The breast cancer took that (having a second child) away from me. I understand that I had no choice, we needed to start chemotherapy quickly.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e10\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cstrong\u003e17\u003c/strong\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u0026lsquo;I contacted the hospital myself because it was not endurable. I got mad over nothing. I was cold all the time but suddenly hot. I had no appetite but was gaining serious weight. And I was so unhappy. I had become a completely different person. They really should have informed and guided me on how to deal with that.\u0026rsquo;\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003eTable 3 Priority lists for information items (n=18)\u003c/p\u003e\n\u003c/div\u003e\n\u003cdiv class=\"gridtable\"\u003e\n\u003ctable id=\"Taba\" border=\"1\"\u003e\n\u003ctbody\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003e\u003cem\u003eTopic\u003c/em\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e\u003cem\u003eSum score\u003c/em\u003e\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eFertility preservation options\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e54\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eRisk of menopause/infertility\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e49\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eLong term consequences of early menopause\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e37\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eMenopausal symptoms\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e25\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003ePsychological impact of infertility/menopause\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e10\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eSelf-care advices to improve overall health\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e9\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eReferral options\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eTreatment options of menopausal symptoms\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e7\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eOptions for non-biological parenthood\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e6\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eExperiences of peers\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e5\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd align=\"left\"\u003e\n\u003cp\u003eDealing with stress\u003c/p\u003e\n\u003c/td\u003e\n\u003ctd colspan=\"2\" align=\"left\"\u003e\n\u003cp\u003e4\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003ctr\u003e\n\u003ctd colspan=\"3\" align=\"left\"\u003e\n\u003cp\u003eAll information items received a score based on their ranking on the specific priority list: first ranked 5 points, second one 4 points, third one 3 points, etc.\u003c/p\u003e\n\u003c/td\u003e\n\u003c/tr\u003e\n\u003c/tbody\u003e\n\u003c/table\u003e\n\u003c/div\u003e\n\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eIn our study we investigated the fertility- and early menopause related information needs of young breast cancer survivors and their professionals through a qualitative study consisting of four study phases. Professionals in providing breast cancer care indicate that there are no guidelines concerning the provision of fertility and early menopause related information, but they address the topic based on their own experience. From a patient perspective it appeared that almost half of the women were not satisfied with the amount of information they received. Furthermore, they struggled to find reliable online information specific to their situation. They needed information on a large variety of topics. Most important topics were considered 1) fertility preservation options, 2) the risk of menopause or infertility, and 3) long term consequences of early menopause. Finally, after interviewing a wide range of stakeholders involved in breast cancer care, we executed their proposed design and implementation of information material, being on a nationwide website aiming at informing and supporting cancer patients.\u003c/p\u003e \u003cp\u003eBreast cancer is the most frequently diagnosed cancer among women aged 15-39 years worldwide [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Counselling about fertility preservation takes place before the start of oncological treatment [\u003cspan additionalcitationids=\"CR23\" citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. This is a phase in which women receive a lot of information in a short time frame. Together with the emotional stress that is caused by the cancer diagnosis, this impairs their ability to remember all information they receive. It is therefore important to provide high quality and easily accessible information on the risk of infertility not only at the time of diagnosis, but also after cancer cure. This way, women can revisit the information at home at the moment fertility related questions arise. Serving these information needs has a positive effect on women\u0026rsquo;s psychological wellbeing [\u003cspan additionalcitationids=\"CR9 CR10\" citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn the current study breast cancer survivors express unmet information needs and often report that they had to bring up the topic themselves during consultations, which is in accordance with previous studies [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. It is established that young breast cancer patients appreciate information on fertility preservation options, contraception, impact of pregnancy on recurrence of breast cancer, impact of chemotherapy on the health of future children, menopausal symptoms and hormonal therapy [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. In the current study participants agreed to this and further added information needs on self-care, long term consequences of early menopause, sexuality and information targeted at their relatives. Furthermore, they confirmed the need for information to take home, preferably a pamphlet referring to an online source [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe major strength of this study is its multi-phase design. We identified information needs from both, a professional and patient perspective. Furthermore, we consulted various stakeholders in providing breast cancer care concerning the design and implementation of the information material. In this way, we implemented a widely supported information tool that is nationally available for all professionals and patients.\u003c/p\u003e \u003cp\u003eOur study has some limitations. It took a reasonable period to complete all study phases. However, this enabled us to approach the subject from all relevant perspectives and also to implement our recommendations on the nationwide website aimed at informing and supporting cancer patients, which is supported by all major stakeholders involved in Dutch cancer care. Since the start of this study, no comparable initiatives have been carried out, which ensures the relevance of our data to date. Furthermore, although we provided an extensive set of qualitative data, quantifying these results was not within the scope of the current study. It would be interesting for future research to provide quantitative data on the information needs of young breast cancer survivors. Finally, it is possible that there has been a selection bias concerning the professionals and patients who chose to participate in the study. This phenomenon is to be expected and further highlights the value of providing quantitative data in a larger population through future research.\u003c/p\u003e \u003cp\u003eIn conclusion, fertility- and early menopause related information needs during breast cancer survivorship have been identified and information material has been designed, developed and implemented. The material offers extensive information on these subjects, aimed at young breast cancer survivors. This way, we accommodated professionals in providing breast cancer care with an information tool that helps them meet the information needs and preferences of their patients. Future research is needed to evaluate the effect of the new information material and could also explore the added value of such an information tool for other cancer survivors.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003eEthics approval and consent to participate: Ethical approval of this study was proposed, but was not required according to the local research ethics committee (CMO Arnhem-Nijmegen file number 2015-1779). Written informed consent was obtained from all individual participants included in the study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eConsent for publication: not applicable\u003c/p\u003e\n\u003cp\u003eAvailability of data and materials: not applicable\u003c/p\u003e\n\u003cp\u003eCompeting interests: the authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003eFunding: Partial financial support was received from the Radboud Oncology Fund.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAuthors\u0026rsquo; contributions: All authors contributed to the study conception and design. Data collection and analysis were performed by EMS. The first draft of the manuscript was written by EMS. All authors revised the manuscript critically for important intellectual content. All authors approved the final manuscript.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eDe Man AM, Rashedi A, Nelen W, Anazodo A, Rademaker A, De Roo S et.al. 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Int J Womens Health. 2017;9:507\u0026ndash;12.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eGorman JR, Usita PM, Madlensky L, Pierce JP. Young breast cancer survivors: their perspectives on treatment decisions and fertility concerns. Cancer Nurs. 2011;34(1):32\u0026ndash;40.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLetourneau JM, Ebbel EE, Katz PP, Katz A, AI WZ, Chien AJ et.al. Pretreatment fertility counseling en fertility preservation improve quality of life in reproductive age women with cancer. Cancer. 2012;1188(6):1710\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDutch breast cancer guideline. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://richtlijnendatabase.nl/richtlijn/borstkanker/algemeen.html\u003c/span\u003e\u003c/span\u003e. Accessed 21-08-2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRunowicz CL, Henry N, Henry K, Mackey H, Cowens-Alvarado R, Cannady R et.al. American Cancer Society/American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline. J Clin Oncol. 2016;34(6): 611\u0026ndash;35.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFemale fertility preservation. Guideline of the European Society of Human Reproduction and Embryology. 2020 ESHRE female fertility preservation guideline development group.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCruz MR, Prestes JC, Gimenes DL, Fanelli MF. Fertility preservation in women with breast cancer undergoing adjuvant chemotherapy: a systematic review. Fertil Steril. 2010;94(1):138\u0026ndash;43.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eConnell S, Patterson C, Newman B. A qualitative analysis of reproductive issues raised by young Australian women with breast cancer. 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Childbearing attitudes and decisions of young breast cancer survivors: a systematic review. Hum Reprod Update. 2014;20(2):279\u0026ndash;92.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLee RJ, Wakefield A, Foy S, Howell SJ, Wardley AM, Armstrong AC. Facilitating reproductive choices: the impact of health services on the experiences of young women with breast cancer. Psychooncology. 2011;20(10):1044\u0026ndash;52.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":true,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Information needs, fertility, early menopause, breast cancer, survivors, follow up","lastPublishedDoi":"10.21203/rs.3.rs-970747/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-970747/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eBackground\u003c/p\u003e\u003cp\u003eApproximately half of premenopausal women diagnosed with breast cancer desire to conceive after they finished treatment. Counseling about the risk of infertility prior to cancer treatment has been proven to improve quality of life after cancer treatment. As a result of this, guidelines focus on informing women on this topic prior to treatment. However, it is equally important to provide fertility related information after primary treatment has been completed, when the wish to conceive might become actual. Therefore, the aim of this study was to identify the fertility- and early menopause related information needs of young breast cancer survivors and to design, develop and implement online information material. \u003c/p\u003e\u003cp\u003eMethods\u003c/p\u003e\u003cp\u003eA qualitative study consisting of four phases was performed: identification of information needs through semi-structured interviews from a professional perspective (1) and a patient perspective (2). Exploration of stakeholders perspective regarding development and implementation of online information material (3) and development and implementation of the information material (4).\u003c/p\u003e\u003cp\u003eResults\u003c/p\u003e\u003cp\u003eProfessionals indicate that there are no guidelines regarding the provision of fertility related information during cancer survivorship. Survivors report unmet information needs. Most important are a) fertility preservation options, b) the risk of menopause or infertility, and c) long term consequences of early menopause. A wide range of stakeholders involved in breast cancer care were interviewed. Based on their proposed design the information material was implemented on a nationwide website aiming at informing and supporting cancer patients. \u003c/p\u003e\u003cp\u003eConclusions \u003c/p\u003e\u003cp\u003eFertility- and early menopause related information needs of young breast cancer survivors and their professionals were identified. Information material has been designed, developed en nationally implemented. This way, professionals in providing breast cancer care are accommodated with an information tool that helps them meet the information needs and preferences of their patients.\u003c/p\u003e","manuscriptTitle":"Fertility- and early menopause related information needs of young breast cancer survivors","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2022-02-17 21:26:01","doi":"10.21203/rs.3.rs-970747/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"editorInvitedReview","content":"","date":"2022-02-16T00:24:15+00:00","index":0,"fulltext":""},{"type":"submitted","content":"BMC Women's Health","date":"2021-11-25T06:25:48+00:00","index":"","fulltext":""},{"type":"decision","content":"Minor revision","date":"2021-10-27T10:37:44+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-womens-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bmwh","sideBox":"Learn more about [BMC Women's Health](http://bmcwomenshealth.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bmwh/default.aspx","title":"BMC Women's Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"d3e2ab38-3c3e-478c-8f68-ba61de5e6d30","owner":[],"postedDate":"February 17th, 2022","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2022-07-24T09:21:46+00:00","versionOfRecord":[],"versionCreatedAt":"2022-02-17 21:26:01","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-970747","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-970747","identity":"rs-970747","version":["v1"]},"buildId":"_2-kVJe1T_tPrBINL-cwx","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}