Patients' and Providers' Needs and Preferences When Considering Fertility Preservation Before Cancer Treatment: Decision-Making Needs Assessment.

BACKGROUND: As cancer treatments continue to improve, it is increasingly important that women of reproductive age 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; however, as few as 12% of women recall discussing fertility preservation. The long-term goal of this program 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 decision-making needs assessment to inform and guide the design of understandable, meaningful, and usable patient decision aid interventions. OBJECTIVE: This study aims to assess providers' and survivors' fertility preservation decision-making experiences, unmet needs, and initial design preferences to inform the development of a web-based patient decision aid. METHODS: Semistructured 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 the transcripts using NVivo (QSR International). A stakeholder advisory panel guided the study and interpretation of results. RESULTS: A total of 51 participants participated in 46 interviews (18 providers and 28 survivors) and 1 ad hoc focus group (7 survivors). The primary themes included the importance of fertility decisions for survivorship, the existence of significant but potentially modifiable barriers to optimal decision making, and a strong support for developing a carefully designed 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 toward 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.

How do couples and spouses/partners consider fertility preservation decisions during cancer treatment planning? A qualitative analysis of dyadic decision making.

OBJECTIVE: This study assessed the needs and perspective of (1) couples and (2) spouses/partners when considering fertility preservation after a cancer diagnosis. RESEARCH APPROACH: Semi-structured interviews explored (1) couples' shared decision-making and (2) spouses'/partners' individual perspectives. PARTICIPANTS: Twelve female cancer survivors and their partners (spouses or domestic/romantic partners) (n = 24). METHODOLOGICAL APPROACH: Dyadic and individual interviews were conducted using a Decisional Needs Assessment interview guide. Thematic analysis identified key themes. FINDINGS: Couples reported making fertility preservation decisions like other major decisions, including prioritizing mutual satisfaction. Partners also reported concerns about patients' health, variable decision-making needs, and letting patients lead. Couples unanimously recommended fertility preservation consultations, and designing resources that provide information and assess needs for both patients and partners. INTERPRETATIONS: Patients and partners have shared and unique needs when facing fertility preservation decisions. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS OR POLICY: Whenever feasible, psychosocial providers should assess and address couples' and partners' fertility preservation decision-making needs.

The Pathways fertility preservation decision aid website for women with cancer: development and field testing.

PURPOSE: To improve survivors' awareness and knowledge of fertility preservation counseling and treatment options, this study engaged survivors and providers to design, develop, and field-test Pathways: a fertility preservation patient decision aid website for young women with cancer©. METHODS: Using an adapted user-centered design process, our stakeholder advisory group and research team designed and optimized the Pathways patient decision aid website through four iterative cycles of review and revision with clinicians (n = 21) and survivors (n = 14). Field-testing (n = 20 survivors) assessed post-decision aid scores on the Fertility Preservation Knowledge Scale, feasibility of assessing women's decision-making values while using the website, and website usability/acceptability ratings. RESULTS: Iterative stakeholder engagement optimized the Pathways decision aid website to meet survivors' and providers' needs, including providing patient-friendly information and novel features such as interactive value clarification exercises, testimonials that model shared decision making, financial/referral resources, and a printable personal summary. Survivors scored an average of 8.2 out of 13 (SD 1.6) on the Fertility Preservation Knowledge Scale. They rated genetic screening and having a biological child as strong factors in their decision-making, and 71% indicated a preference for egg freezing. Most women (> 85%) rated Pathways favorably, and all women (100%) said they would recommend it to other women. CONCLUSIONS: The Pathways decision aid is a usable and acceptable tool to help women learn about fertility preservation. IMPLICATIONS FOR CANCER SURVIVORS: The Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.