Patients’ and Providers’ Needs and Preferences When Considering Fertility Preservation Before Cancer Treatment: Decision-Making Needs Assessment (Preprint)

Abstract

BACKGROUND As cancer treatments continue to improve, it is increasingly important that reproductive-aged young women have an opportunity to decide whether they want to undergo fertility preservation treatments to try to protect their ability to have a child after cancer. Clinical practice guidelines recommend that providers offer fertility counseling to all young women with cancer, but as few as 12% of women recall discussing fertility preservation. Patients report limited awareness, opportunity, and time to make this complex personal decision. The long-term goal of this program of research is to develop an interactive webbased patient decision aid to improve awareness, access, knowledge, and decision making for all young women with cancer. The International Patient Decision Aid Standards collaboration recommends a formal decisional needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. OBJECTIVE This study assessed providers’ and survivors’ fertility preservation decision-making experiences, unmet needs, and design preferences to inform the development of a web-based patient decision aid. METHODS Semi-structured interviews and an ad hoc focus group assessed current decision-making experiences, unmet needs, and recommendations for a patient decision aid. Two researchers coded and analyzed transcripts using NVIVO. A stakeholder advisory panel guided the study and interpretation of results. RESULTS A total of 51 participants participated in 46 interviews (n=18 providers and 28 survivors) and 1 ad hoc focus group (n=7 survivors). Primary themes included (1) the importance of fertility decisions for survivorship, (2) significant but potentially modifiable barriers to optimal decision making exist, and (3) there is strong support for developing a patient decision aid website. Providers reported needing an intervention that could quickly raise awareness and facilitate timely referrals. Survivors reported needing understandable information and help with managing uncertainty, costs, and pressures. Design recommendations included: providing tailored information (eg, by age and cancer type), optional interactive features, and multimedia delivery at multiple time points, preferably outside the consultation. CONCLUSIONS Decision making about fertility preservation is an important step in providing high-quality comprehensive cancer care, and a priority for many survivors’ optimal quality of life. Decision support interventions are needed to address gaps in care and help women quickly navigate towards an informed, values-congruent decision. Survivors and providers support developing a patient decision aid website to make information directly available to women outside of the consultation and to provide self-tailored content according to women’s clinical characteristics and their information-seeking and deliberative styles. CLINICALTRIAL Not applicable

The experience of female oncological patients and fertility preservation: A phenomenology study

“…Nevertheless, in some cases, regardless of the patient's desire to have children, fertility preservation became essential for them, and an even more important issue than having cancer. Previous research has emphasised the importance of fertility among young adult cancer patients (Anazodo et al, 2019;Hoffman et al, 2021;Jones et al, 2017;Vukovi c et al, 2019;Zaami et al, 2021) and how this could vary according to patients' sociodemographic characteristics, such as already having children at time of diagnosis (Dahhan et al, 2021;Di Mattei et al, 2021). Previous maternity is an aspect that was not considered in this study, and it should be explored in future research.…”

“…In other words, they are based on the clinical and medical aspects of this issue. However, there is a lack of research that explores the patients' needs, feelings and experiences with this process (Dahhan et al, 2021;Hoffman et al, 2021). More research needs to be done on the experience of cancer patients undergoing fertility preservation treatments, which is becoming an important issue due to the high survival rates achieved by antineoplastic treatments.…”

“…Incorporating fertility issues in the treatment and care of patients diagnosed with cancer at a reproductive age has therefore become an increasingly important topic in clinical and research contexts (Abdul et al, 2021;Anazodo et al, 2019;Chen et al, 2022;Harada & Osuga, 2019). Fertility emerged as an integral component of quality of life for cancer survivors receiving gonadotoxic treatments, and it is considered an essential component of the comprehensive approach to cancer patients' care (Hoffman et al, 2021;Vukovi c et al, 2019;Zaami et al, 2021).…”

“…As regards fertility preservation in oncology patients, there is an increasing number of studies describing the techniques and the success rates of the different options (Arecco et al, 2022;Chen et al, 2022). However, there is a lack of knowledge about patients' specific needs, fears or feelings about the procedure for fertility preservation when they are diagnosed with cancer (Dahhan et al, 2021;Hoffman et al, 2021). Nursing professionals should base their care on an understanding of what people feel or experience when they are facing an event that destabilises their daily life, as cancer does (Errasti Ibarrondo et al, 2018;Guerrero-Castañeda et al, 2017).…”

Information needs and research priorities in long‐term survivorship of breast cancer: Patients and health professionals' perspectives

“…According to the results of Survey 2, health care professionals identified 106 topics for future research, but most had already been answered by available scientific evidence. Research about fertility preservation in the context of BC and different procedures to become pregnant, considering the risks and benefits, has emerged as a priority research area in the present study and in other studies about the subject (Brown et al, 2021;Hoffman et al, 2021;Thewes et al, 2005;Torres-Castaño et al, 2021).…”