The Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.

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.

Fertility preservation (FP) for patients with cancer is an emerging field. With the advancement of technology, patients may face a complex decision-making process about whether to preserve fertility. The purpose of this article is to explore how young women with cancer perceive patient–provider communication in FP decision making. In this study, 25 women between the ages of 18 and 39 were interviewed retrospectively. They were interviewed one time to learn about their decision-making process related to FP. Results of this analysis indicate that patients seek support and involvement from providers throughout the process of decision making. They prefer providers to be directive when referring to the fertility clinic. Later in the process, they expect a supportive style of communication from providers. Patient-accessible language, supportive and reassuring styles of communication, and an existing relationship with providers may enhance well-being of the patients.

To measure the reproductive concerns of young adult male cancer survivors.DESIGN: Mixed methods. MATERIALS AND METHODS: In phase I, 10 young adult male cancer survivors, age 18-35 years, participated in a telephone interview. Prior to the interview, they received a version of the 18-item Reproductive Concerns After Cancer (RCAC) scale that was originally validated for females, with language adapted for males based on expert opinion. The RCAC scale includes six domains of concern (fertility potential, partner disclosure, child's health, personal health, acceptance, becoming pregnant). During the interview, participants were asked to critically appraise each item using a verbal probing technique. They were also asked about overall structure of the survey, cultural sensitivity and relevance. In Phase II, we are recruiting young adult male cancer survivors to a web-based survey testing the resultant RCAC-male scale. We calculated internal consistency of the scale and six subscales as coefficient alpha.RESULTS: Phase I interviews provided feedback to refine item wording and evidence of face validity, and resulted in an 18-item RCAC-male scale that includes six domains in parallel with the original RCAC scale for females. As of April 2017, 40 participants had completed the survey with the adapted scale. Participants had a mean age of 29.4 years (SD 4.7), 73% were college graduates, and 61% had a committed partner. The most common cancers were hematologic (34%), thyroid (22%) and testicular (10%). Similar to the original RCAC scale, internal consistencies for the overall RCAC-male scale and the six subscales were in the acceptable to good range.CONCLUSIONS: Feedback from young adult male cancer survivors supported the face validity of the RCAC-male scale. Preliminary data suggest that the scale and subscales have acceptable internal consistency, providing support for the scale's reliability. A larger sample size is needed to provide evidence of validity. This scale has potential to be an effective tool to identify young adult male cancer survivors' concerns related to fertility and parenthood and to assist with meeting their long-term reproductive health needs.