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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.

Abstract Background Sperm cryopreservation offers male cancer patients a critical opportunity to preserve fertility prior to gonadotoxic therapy, yet utilization of banked sperm remains modest, typically under 10%. A structured understanding of barriers across the cancer survivorship continuum is needed to support patients in utilization of cryopreserved sperm in alignment with their reproductive goals. Materials and Methods This expert review synthesizes current evidence and clinical experience to explore the multifaceted barriers to cryopreserved sperm use and propose specific solutions. Key intervention timepoints are examined, including the post-treatment fertility return visit, long-term cryopreservation while remote from family building, readiness for family building, and posthumous considerations. We subsequently outline an optimal Oncofertility Patient Care Pathway. Results Multiple clinical, psychosocial, and financial obstacles limit the transition from sperm banking to use. Approximately one-third of survivors do not attend post-treatment fertility return visits, reducing opportunities for counseling and longitudinal reproductive planning. Psychological factors—including fear of cancer recurrence and delayed readiness for family building—contribute to prolonged storage. Many patients remain underinformed about the efficacy and processes of assisted reproductive techniques, while financial concerns are significant. These intersecting barriers hinder use of cryopreserved sperm. Opportunities exist to intervene at key timepoints, as outlined in the Oncofertillity Patient Care Pathway. Conclusion A multidisciplinary and structured oncofertility pathway, such as detailed in this review, is needed to support cancer survivors in achieving their reproductive goals. Enhanced counseling, technology-enabled follow-up systems, targeted psychological support, and policies promoting broader insurance coverage for assisted reproduction represent key strategies to overcome existing barriers.

ObjectiveWith a growing population of young cancer survivors, there is an increasing need to address the gaps in evidence regarding cancer survivors’ obstetric outcomes, fertility care access, and experiences. As part of a large research program, this study engaged survivors and experts in co-developing and testing the validity, reliability, acceptability, and feasibility of a scale to assess survivor-reported barriers to motherhood after cancer.MethodsScale items were developed based on literature and expert review of 226 reproductive health items, and six experience and focus groups with 26 survivors of breast and gynecological cancers. We then invited 128 survivors to complete the scale twice, 48 hours apart, and assessed the scale’s psychometric properties using exploratory factor analyses including reliability, known-group validity, and convergent validity.ResultsItem development identified three primary themes: multifaceted barriers for cancer survivors; challenging decisions about whether and how to pursue motherhood; and a timely need for evidence about obstetric outcomes. Retained items were developed into a 24-item prototype scale with four subscales. Prototype testing showed acceptable internal consistency (Cronbach’s alpha=0.71) and test-retest reliability (intraclass correlation coefficient=0.70). Known-group validity was supported; the scale discriminated between groups by age (x=70.0 for patients ≥35 years old vs 54.5 for patients <35 years old, p=0.02) and years since diagnosis (x=71.5 for ≥6 years vs 54.3 for<6 years, p=0.01). The financial subscale was correlated with the Economic StraiN and Resilience in Cancer measure of financial toxicity (ρ=0.39, p<0.001). The scale was acceptable and feasibly delivered online. The final 22-item scale is organized in four subscales: personal, medical, relational, and financial barriers to motherhood.ConclusionThe Survivorship Oncofertility Barriers Scale demonstrated validity, reliability, and was acceptable and feasible when delivered online. Implementing the scale can gather the data needed to inform shared decision making and to address disparities in fertility care for survivors.

PurposeColorectal cancer (CRC) is a malignancy that usually occurs in older age individuals. However, CRC cases in young adults are on the rise, and this increase is expected to continue. Young adult CRC requires the healthcare team to familiarize themselves with the unique needs of this population, including concerns about treatment-related infertility. We performed a retrospective review to determine how often our patients, 18–39 years old (yo), had discussions regarding fertility preservation prior to starting stage III CRC treatment.MethodsOur electronic health record was utilized to identify adult patients < 40 yo with a stage III CRC diagnosis during 1/1/2015–9/1/2019. Fertility preservation discussions were determined by searching the patient’s EHR chart. Progress notes from the medical oncology, surgery, and/or radiation oncology teams were reviewed. Additionally, notes from our fertility specialist’s team were reviewed when consulted.ResultsOne hundred and three patients met criteria. Patients were 21–39 yo at diagnosis (median age of 34 yo). Fifty-two percent were male while the remaining 48% were female. Forty-six percent had stage III colon cancer while 54% had stage III rectal cancer. Search terms and progress notes were utilized to determine if discussions were documented. Fertility discussions were documented in 73% of cases while 27% of patients lacked documentation regarding fertility.ConclusionOur results show that most of our young adult stage III CRC population participate in fertility preservation discussions. However, in order to capture all patients, we recognize that a more formal approach is warranted. We additionally recommend these discussions occur with all patients of child-bearing age.

PurposeTo 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©.MethodsUsing 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.ResultsIterative 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.ConclusionsThe Pathways decision aid is a usable and acceptable tool to help women learn about fertility preservation.Implications for Cancer SurvivorsThe Pathways decision aid may help women make well-informed values-based decisions and prevent future infertility-related distress.

Preimplantation genetic diagnosis (PGD) allows couples to avoid having a child with an inherited condition, potentially reducing cancer burden in families with a hereditary cancer predisposition. This study investigated and compared awareness and acceptance of PGD among patients with different hereditary cancer syndromes. Questionnaires were mailed to 984 adults with hereditary breast and ovarian cancer, Lynch syndrome, familial adenomatous polyposis, or multiple endocrine neoplasia type 1 or 2. Associations between clinical, demographic, and psychosocial factors and awareness and acceptance of PGD were examined. Of 370 respondents (38 % return rate), 28 % felt their syndrome impacted family planning, 24 % were aware of PGD, 72 % felt that PGD should be offered, 43 % would consider using PGD, and 29 % were uncertain. Family experience and syndrome-specific characteristics, such as disease severity, quality of life and availability of medical interventions as well as gender, family planning stage, and religiosity impact perceptions of the acceptability of PGD, though a high level of uncertainty exists. Hereditary cancer patients lack awareness of PGD despite feeling that PGD should be offered, highlighting the need for education on this topic. While we found attitudes about the acceptability of PGD to be generally similar to those reported in the literature and of genetics and ethics experts, we observed similarities and differences between syndromes that provide insight into why some hereditary cancer patients may find PGD more acceptable than others.

Our aim is to document a case of endometrioid adenocarcinoma of the ovary found in an endometriotic cyst that was suspected on pelvic ultrasound in a patient with polycystic ovary syndrome, normal Ca125, and a recent history of ovulation induction for IVF. She underwent an exploratory laparotomy with left salpingo-oophorectomy and omental biopsies followed by reexploration, complete staging, and modified radical abdominal hysterectomy and right salpingo-oophorectomy. An endometrioma described as suspicious for malignancy by an experienced ultrasound examiner should prompt immediate referral to a gynecological oncologist irrespective of Ca125 levels especially in women with a history of ovulation induction and endometriosis.

This important and timely review by Dr. Munster effectively highlights the complexity of addressing fertility- related issues and fertility preservation in young women with breast cancer. Given the lack of long-term data, we are often left with more questions than answers about determining the appropriate management of these patients. Caring for women with estrogen receptor-positive tumors and BRCA mutations can add additional complexity. Women with hormone receptor-positive tumors face years of estrogen deprivation and/or endocrine therapy that is contraindicated during pregnancy. BRCA mutation carriers may also consider risk- reducing surgeries to decrease the risk of second breast cancers or to prevent ovarian cancers, thus further limiting fertility potential. In considering fertility issues in breast cancer patients, we must also contemplate the available data regarding the safety of pregnancy after breast cancer, the effects of breast cancer treatment on fertility, and how these effects impact women's ability to cope with their diagnosis and their survivorship. This intersection of oncology and reproductive endocrinology will provide greater coordination of care and offer even more opportunities for our patients to pursue fertility options along with their cancer care. In every challenge lies opportunity. While there is still much work to be done, we have tremendous room for improvement in utilizing the resources that we have; we must do a better job of referring women for a fertility preservation consultation and supporting them during the decision-making process. Patients who have fertility preservation consultations report less distress than those who did not, even if they elect not to preserve fertility. [18] Although we have directed tremendous time and effort toward improving fertility preservation techniques, we have neglected to consider the factors that influence whether or not a woman ultimately decides to opt for fertility preservation. Unlike most other medical decisions, young women with breast cancer have to make a complex, future-oriented decision under significant physical, emotional, and financial stress. This decision may be further complicated by uncertain feelings about biological parenthood, the knowledge that a successful pregnancy is not guaranteed, the expenses associated with the various fertility preservation methods, and the fact that these techniques may end up being unnecessary. Making a decision about fertility preservation is a process that is currently overlooked; future research should focus on interventions that could facilitate this process, such as the use of psychological counseling and decision aids.

Purpose Fertility preservation is an increasingly important topic in adolescent and young adult cancer survivorship, yet treatments remain under-utilized, possibly due to lack of awareness and understanding. The internet is widely used by adolescents and young adults and has been proposed to fill knowledge gaps and advance high-quality, more equitable care. As a first step, this study analyzed the quality of current fertility preservation resources online and identified opportunities for improvement. Methods We conducted a systematic analysis of 500 websites to assess the quality, readability, and desirability of website features, and the inclusion of clinically relevant topics. Results The majority of the 68 eligible websites were low quality, written at college reading levels, and included few features that younger patients find desirable. Websites mentioned more common fertility preservation treatments than promising experimental treatments, and could be improved with cost information, socioemotional impacts, and other equity-related fertility topics. Conclusions Currently, the majority of fertility preservation websites are about, but not for, adolescent and young adult patients. High-quality educational websites are needed that address outcomes that matter to teens and young adults, with a priority on solutions that prioritize equity. Implications for cancer survivors Adolescent and young adult survivors have limited access to high-quality fertility preservation websites that are designed for their needs. There is a need for the development of fertility preservation websites that are clinically comprehensive, written at appropriate reading levels, inclusive, and desirable. We include specific recommendations that future researchers can use to develop websites that could better address AYA populations and improve the fertility preservation decision making process.

IntroductionNational guidelines recommend that all reproductive-age women with cancer be informed of their fertility risks and offered referral to fertility specialists to discuss fertility preservation options. However, reports indicate that only 5% of patients have consultations, and rates of long-term infertility-related distress remain high. Previous studies report several barriers to fertility preservation; however, initial success has been reported using provider education, patient decision aids and navigation support. This protocol will test effects of a multicomponent intervention compared with usual care on women’s fertility preservation knowledge and decision-making outcomes.Methods and analysisThis cluster-randomised trial will compare the multicomponent intervention (provider education, patient decision aid and navigation support) with usual care (consultation and referral, if requested). One hundred newly diagnosed English-speaking women of reproductive age who are at risk of cancer-related infertility will be recruited from four regional oncology clinics.The Pathways patient decision aid website provides (1) up-to-date evidence and descriptions of fertility preservation and other family-building options, tailored to cancer type; (2) structured guidance to support personalising the information and informed decision-making; and (3) a printable summary to help women prepare for discussions with their oncologist and/or fertility specialist. Four sites will be randomly assigned to intervention or control groups. Participants will be recruited after their oncology consultation and asked to complete online questionnaires at baseline, 1 week and 2 months to assess their demographics, fertility preservation knowledge, and decision-making process and quality. The primary outcome (decisional conflict) will be tested using Fisher’s exact test. Secondary outcomes will be assessed using generalised linear mixed models, and sensitivity analyses will be conducted, as appropriate.Ethics and disseminationThe University of Texas MD Anderson Cancer Center provided approval and ongoing review of this protocol. Results will be presented at relevant scientific meetings and submitted for publication in a peer-reviewed journal.Trial registration number NCT03141437; Pre-results.