Phase 1: identification of relevant topics from a professional perspective
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. The topic guide is presented in Additional file 2: Appendix B.
Findings originating from the interviews with professionals were that they stated 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 felt like it is their task to initiate the conversation on these topics, since they feel that women struggle to address these topics themselves. Professionals indicated 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 said that they receive very little questions on fertility and possible early menopause. On the other hand, breast cancer nurses did 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 surgical oncologist indicated that they feel the medical oncologist is the designated professional to elaborate on these topics with patients and survivors.
Phase 2: identification of information needs from a patient perspective
Patient interview results
Several information themes were identified from the interview data and are consecutively described below in italic headings. 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 participants at the time of their diagnosis by their medical oncologist, surgical oncologist or breast cancer nurse. Women in this study identified that the 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 (8 out of 18; 44%) were not satisfied with the amount of information they received and four of them (22.2%) reported not having received any information on the subject.
After completion of their initial treatment, most of the women in this study reported 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). They identified that the 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 who participated in an interview 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 in this study 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 in this study reported to need written information on fertility and early menopause. They wanted to prepare themselves for hospital visits and read the information again afterwards. This gave them a feeling of being in control and being able to acquire information in their own pace. The preferred medium was 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. They identified that the information should be both concise and detailed, factual and easily accessible. (Table 2, quote 3).
Most participants stated 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 wanted to be able to ask questions online, preferably to health care professionals. Some women preferred 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 in this study were in need of personalized information that is specific to their situation as a young woman with a diagnosis of breast cancer. They had 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 had 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 in this study 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. Most 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).
Participants 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 in this study 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 needed guidance, also concerning their menopause-related symptoms. (Table 2, quote 10).
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 was 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 medical 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 was 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 expressed the wish for very detailed information. A proportion of professionals was 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 was 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 was 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 was considered 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 was 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 (http://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 Organizations 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 (information link: Kanker en vruchtbaarheid bij vrouwen).
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