Fertility Preservation Decisions Research Articles

Co-design and usability of an interactive web-based fertility decision aid for transgender youth and young adults.

To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design. TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale). Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores. We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.

Fertility related knowledge, attitudes, and decision-making among gender diverse youth - A narrative review.

The number of transgender and gender diverse (TGD) youth seeking care continues to increase, necessitating comprehensive counseling about potential long-term effects of gender-affirming medical interventions on fertility. The objective of this narrative review was to examine fertility related knowledge, attitudes, and decision making (including factors influencing decisions, decision regret, and decision tools) among TGD youth. We searched PubMed, PsycInfo and Google Scholar for original, peer reviewed research investigating TGD youth attitudes and knowledge of fertility and fertility preservation, perspectives on fertility counseling and fertility preservation decision making, as well as fertility related decision tools. We reviewed 106 studies; eight were included in this narrative review. Four studies assessed TGD youth knowledge and attitudes of fertility and fertility preservation, three examined perspectives on fertility counseling and fertility preservation decision making, and three discussed development of decision tools. Key findings were that: 1) many TGD youth are aware of potential fertility related impacts of gender-affirming treatments but there are still unmet informational needs, 2) some TGD youth report an interest in future biological parenthood, and of those who are not currently interested in biological parenthood, many acknowledge their desires may change over time, 3) ongoing discussions about fertility and fertility preservation are critical, and 4) decision tools are in development. In conclusion, TGD youth and their caregivers should receive ongoing, comprehensive fertility counseling, and decision tools may be helpful to facilitate these discussions and decisions in each youth's gender-affirming care journey.

Association of platinum-based chemotherapy with live birth and infertility in female survivors of adolescent and young adult cancer

ObjectiveLack of treatment-specific fertility risks for female survivors of adolescent and young adult cancer limits counseling on fertility preservation decisions. The objective was to estimate the effect of platinum-based chemotherapy on live birth and infertility after cancer. DesignRetrospective cohort study using U.S. administrative data ParticipantsWe identified incident breast, colorectal and ovarian cancer cases in females ages 15-39 who received platinum-based chemotherapy or no chemotherapy and matched them to females without cancer. ExposurePlatinum-based chemotherapy OutcomesWe estimated the effect of chemotherapy on incidence of live birth and infertility after cancer, overall and after accounting for competing events (recurrence, death, sterilizing surgeries). ResultsThere were 1,287 survivors in the chemotherapy group, 3,192 survivors in the no chemotherapy group, and 34,147 women without cancer, mean age 33. Accounting for competing events, overall five-year live birth incidence was lower in the chemotherapy group (3.9%) versus the no chemotherapy (6.4%) group. Adjusted relative risks versus no chemotherapy and no cancer were 0.61 (95%CI 0.42-0.82) and 0.70 (95%CI 0.51-0.93), respectively. Overall five-year infertility incidence was similar in the chemotherapy group (21.8%) compared to no chemotherapy group (20.7%). The adjusted relative risks versus no chemotherapy and no cancer were 1.05 (95%CI 0.97-1.15) and 1.42 (95%CI 1.31-1.53), respectively. Conclusions and relevanceCancer survivors treated with platinum-based chemotherapy experienced modestly increased adverse fertility outcomes. Estimated effects of platinum-based chemotherapy were affected by competing events, suggesting the importance of this analytic approach for interpretations that ultimately inform clinical fertility preservation decisions.

Impact of Financial Costs on Patients' Fertility Preservation Decisions: An Examination of Qualitative Data from Female Young Adults with Cancer and Oncology Providers.

Purpose: To examine the impact of financial costs on fertility preservation decisions among female young adults (YAs) with cancer. Methods: Female YAs (N = 18; aged 21-36) with a history of cancer and oncology providers (N = 12) were recruited from an National Cancer Institute-designated comprehensive cancer center in a state without insurance coverage for fertility preservation. YAs and providers completed individual interviews and a brief online assessment. Qualitative description using thematic analysis was used to identify, analyze, and report common themes. Descriptive statistics was used to characterize the sample. Results: Female YAs and oncology providers highlighted the critical role that high out-of-pocket costs play in YAs' fertility preservation decisions along with the value that enhanced insurance coverage for fertility preservation would have for increasing female YAs' access to and utilization of fertility preservation. Although providers were concerned about preservation costs for their patients, they reported that their concerns did not impact whether they referred interested female YAs to reproductive specialists. Oncology providers expressed concern about inequities in utilization of fertility preservation for female and racially/ethnically minoritized YAs that were exacerbated by the high out-of-pocket fertility preservation costs. Conclusion: Cost is a significant barrier to fertility preservation for female YA cancer patients. Female YAs of reproductive age may benefit from decision support tools to assist with balancing the cost of fertility preservation with their values and family building goals. Policy-relevant interventions may mitigate cost barriers and improve access to care.

Current Position of Oncofertility in Adolescent Female Cancer Patients: A Comparative Review on Society Guidelines.

Fertility preservation (FP) in pediatric and adolescent oncology patients presents a complex interplay between cancer treatment imperatives and reproductive aspirations, demanding a multi-disciplinary approach. Essential guidelines emphasize the importance of early referrals to FP specialists, ensuring timely counseling on oocyte and ovarian tissue cryopreservation options. Proper patient selection and risk assessment, considering intrinsic and extrinsic factors, is crucial for judicious resource utilization and optimal outcomes. Gonadotoxic effects of cancer treatments pose significant threats to reproductive capabilities. Oocyte cryopreservation (OC) is preferred in post-pubertal adolescents without partners. Cultural and religious concerns, especially regarding hymenal integrity, influence FP decisions, necessitating culturally sensitive consent processes. Ovarian tissue cryopreservation (OTC) offers an alternative for those unfit for OC. Despite its experimental label in some societies, emerging data support the efficacy of OTC, with ovarian tissue transplantation (OTT) showing promise in restoring ovarian function. However, the reintroduction of potentially malignant cells during transplantation remains a concern. Overall, while FP offers hope for future parenthood, the intricacies of decision-making and the potential medical, ethical, and cultural challenges underscore the importance of a personalized, multi-disciplinary approach. In this review, guidelines from various societies have been comprehensively reviewed and analyzed to provide insight into the clinical practice of oncofertility.

A prospective longitudinal analysis of the predictors of amenorrhea after breast cancer chemotherapy: Impact of BRCA pathogenic variants.

Better tools for post-chemotherapy amenorrhea risk assessment are needed for fertility preservation decision-making. Our aim was to determine the predictors of amenorrhea risk at 12 and 18 months post-chemotherapy in women with breast cancer. 142 women with breast cancer were longitudinally followed for their menstrual changes at 6, 12, and 18 months after the completion of adjuvant chemotherapy with an Anthracycline-Cyclophosphamide-based (AC-based) or Cyclophosphamide-Methotrexate +5-Fluorouracil regimen. Pre- and/or post-chemo AMH levels, age, BMI, tamoxifen use, regimen type, and germline BRCA pathogenic variant (gBRCApv) status were evaluated for the prediction of amenorrhea at 6-18 months. In multivariable-adjusted logistic regression, age (p = 0.03) and AMH (p = 0.03) at 12 months, and gBRCApv status (p = 0.03) at 18 months were significant predictors of amenorrhea (areas under the ROC curve of 0.77 and 0.76, for 12 and 18 months, respectively) among 102 evaluable subjects. An undetectable AMH immediately post-chemotherapy was predictive of amenorrhea with <18 month follow-up. In longitudinal analysis estimating time trends, baseline AMH and gBRCApv status was associated with the risk of amenorrhea over 6-18 months; the AMH >2.0 ng/mL group showed attenuated time-trend risk of amenorrhea versus AMH ≤2.0 group (ratio of ORs = 0.91, 95% CI = 0.86-0.97, p = 0.002), while the gBRCApv + showed a steeper time trend, versus the controls (ratio of ORs = 1.12, 95% CI = 1.04-1.20, p = 0.003). In addition to the pre- and post-treatment AMH levels, gBRCApv status is a novel potential predictor of amenorrhea at 12 and 18 months after chemotherapy. The higher likelihood of amenorrhea in women gBRCApv suggests that they are more prone to losing their fertility post-chemotherapy.

Body image disturbances in adolescent and young adult cancer patients confronting infertility risk and fertility preservation decisions

Purpose Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. Methods AYA cancer patients (n = 27) aged 12–25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. Results Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. Conclusions AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.

Exploring the experiences and priorities of women with a diagnosis of ovarian cancer

PurposeOvarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences.MethodsParticipants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years).ResultsTwo hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001).ConclusionFear of recurrence was participants’ primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need.

Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study.

Purpose: To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. Methods: As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. Results: One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20-25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, p = 0.001) and less likely to have involved mothers (56% vs. 71%, p = 0.04) or fathers (39% vs. 55%, p = 0.04). Conclusion: This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.

Body image disturbances in adolescent and young adult patients with cancer confronting infertility risk and fertility preservation decisions.

e24175 Background: Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to better elucidate the relationship between oncofertility discussions and body image disturbances in the AYA cancer population. Methods: AYA cancer patients (n = 27) aged 12-25 years whose cancer treatment conferred the risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. Results: Body image concerns, including those related to both physical appearance and body functioning, emerged as common themes. Specific concerns included 1) anticipating and coping with body changes, 2) discomfort in experiencing and discussing one’s own body, 3) fear of judgement, and 4) failing to meet both internal and external expectations of the body. Some participants expressed a sense of loss when learning about infertility risk and the emotional challenges associated with accepting this risk. Several respondents worried that they would be negatively judged by their peers for a perceived defect of the body. Still others struggled with facing the unknown regarding fertility preservation and the difficulty in sharing this information with loved ones and future romantic partners. Conclusions: AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and decisions regarding fertility preservation. In identifying and exploring these themes, future opportunities, and novel interventions for improving oncofertility practice and discussions among AYAs with a focus on body image positivity emerge. These include the dual involvement of multidisciplinary teams (oncology and reproductive medicine) at initial clinical consultation and frequent follow-up contact; AYA and oncofertility-specific peer support programs, both in-person and virtual; and early, frequent involvement of social workers and mental health providers experienced in both cancer care and reproductive medicine.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients

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. 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. 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. 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. 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.

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories. To enhance understanding of AYAs' diverse experiences, this study examined alignment and/or divergence of FP decisional TPs among non-Hispanic White (NHW) AYAs and REM AYAs. Qualitative semistructured interviews were conducted in person, by video, or phone with 36 AYAs (20 NHW and 16 REM [nine Hispanic and seven Black/multiracial Black). The constant comparative method was used to identify and analyze themes illustrating participants' conceptualization and/or experience of FP decisional TPs. Seven thematic TPs emerged: (1) emotional reaction to discovering FP procedures exist; (2) encountering unclear or dismissive communication during initial fertility conversations with health care providers; (3) encountering direct and supportive communication during initial fertility conversations with health care providers; (4) participating in critical family conversations about pursuing FP; (5) weighing personal desire for a child against other priorities/circumstances; (6) realizing FP is not feasible, and (7) experiencing unanticipated changes in cancer diagnosis or treatment plans/procedures. TP variations include REM participants reported dismissive communication and suggested cost was prohibitive. NHW participants emphasized more forcefully that biological children may become a future priority. Understanding how clinical communication and priorities/resources may vary for NHW and REM AYAs can inform future interventions aimed at reducing health disparities and enhancing patient-centered care.

64. Assessment of Satisfaction with Fertility Preservation Decision-Making in a Pediatric and Adolescent Population

64. Assessment of Satisfaction with Fertility Preservation Decision-Making in a Pediatric and Adolescent Population

Effectiveness and feasibility of online fertility preservation decision aids for young female patients with cancer: a systematic review protocol

IntroductionCancer diagnosis and treatment can impair fertility, and younger female patients with cancer have a particularly strong need for fertility preservation. Fertility preservation decision aids are thought to help patients...

Abstract P6-05-02: PRESENCE OF BRCA MUTATIONS AND PRE-CHEMOTHERAPY SERUM ANTI-MULLERIAN HORMONE LEVELS PREDICT RISK OF AMENORRHEA IN WOMEN WITH BREAST CANCER

Abstract OBJECTIVE: The likelihood of post-chemotherapy (ChT) amenorrhea is still empirically determined. Our aim was to determine the predictors of amenorrhea risk post- ChT in women with breast cancer(ca). As acute amenorrhea (&amp;lt; 12mo post-ChT) can be temporary, we used amenorrhea status 12 and 18 months post-ChT as the primary endpoint. MATERIALS AND METHODS: 102 women aged 18-44, with regular cycles and stage I-III breast ca were prospectively and longitudinally followed for their menstrual pattern changes at 6, 12, and 18mo after the completion of adjuvant ChT with an Anthracycline-Cyclophosphamide-based (AC) or Cyclophosphamide-Methotrexate +5-Fluorouracil regimen on an IRB-approved protocol. Prior ChT, ovarian surgery, pelvic RT, family history of POI, and infertility diagnosis were the exclusion criteria. AMH was measured pre- and immediately post- ChT. Amenorrhea was defined as no bleeding for 4 consecutive cycles. Preand/or post-ChT AMH levels, age and BMI at the onset of ChT, BMI, tamoxifen use, regimen type (AC-based vs. not), and BRCA mutation (m) status (positive vs. not) were evaluated for the prediction of amenorrhea risk. RESULTS: In multivariable-adjusted logistic regression models, age (p=0.03) and AMH (p=0.03) were significant predictors of amenorrhea at 12mo, and BRCAm status (p=0.03) at 18 mo; these models yielded areas under the ROC curve of 0.77 and 0.76, respectively. An undetectable AMH post-ChT was best predictive of amenorrhea with shorter follow-up, but not at 18mo. In longitudinal analysis (with data at 0, 6, 12, and 18 months) estimating ‘time-trends’, a baseline AMH &amp;lt; 2.0 ng/ml (optimal cut-off from ROC curve) and BRCAm status were associated with the risk of amenorrhea. The baseline AMH ≥2.0 group showed attenuated time-trend vs. the AMH &amp;lt; 2.0 ng/ml group (ratio of ORs=0.91, 95% CI=0.86-0.97, p=0.002), while the BRCA-positive group showed a steeper time-trend in the odds ratio (OR) of amenorrhea, compared to the non-positive group (ratio of ORs=1.12,95% CI=1.04-1.20, p=0.003) (Table 1). Sensitivity analyses demonstrated the robustness of these findings, for example, yielding an 8-10% increased risk of amenorrhea for BRCAm carriers, with p-values of 0.008- 0.04. CONCLUSIONS: Age, pre-and post-ChT AMH levels, and BRCAm status are potential predictors of amenorrhea at 12 and 18mo post-ChT. These predictors may help better guide fertility preservation decision-making in women with breast ca. The higher likelihood of amenorrhea in women with BRCAm suggests that they may be more prone to lose their ovarian function post-ChT and should be accordingly counseled. Table 1. Longitudinal analysis at 0, 6, 12 and 18 months for the difference in amenorrhea trend between groups dichotomized by baseline factors. Citation Format: Shari B. Goldfarb, Volkan Turan, Giuliano Bedoschi, Nadia Abdo, Cassandra Chang, heejung Bang, KUTLUK H. OKTAY. PRESENCE OF BRCA MUTATIONS AND PRE-CHEMOTHERAPY SERUM ANTI-MULLERIAN HORMONE LEVELS PREDICT RISK OF AMENORRHEA IN WOMEN WITH BREAST CANCER [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P6-05-02.

Perspectives surrounding fertility preservation and posthumous reproduction for adolescent and young adults with terminal cancer: Survey of allied health professionals.

While all reproductive-aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. This is a cross-sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late-stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR-specific education. ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.

Cancer, Fertility and Me: Developing and Testing a Novel Fertility Preservation Patient Decision Aid to Support Women at Risk of Losing Their Fertility Because of Cancer Treatment.

BackgroundWomen with a new cancer diagnosis face complex decisions about interventions aiming to preserve their fertility. Decision aids are more effective in supporting decision making than traditional information provision. We describe the development and field testing of a novel patient decision aid designed to support women to make fertility preservation treatment decisions around cancer diagnosis.MethodsA prospective, mixed-method, three stage study involving: 1) co-development of the resource in collaboration with a multi-disciplinary group of key stakeholders including oncology and fertility healthcare professionals and patient partners (n=24), 2) alpha testing with a group of cancer patients who had faced a fertility preservation treatment decision in the past (n=11), and oncology and fertility healthcare professionals and stakeholders (n=14) and, 3) beta testing with women in routine care who had received a recent diagnosis of cancer and were facing a fertility preservation treatment decision (n=41) and their oncology and fertility healthcare professionals (n=3). Ten service users recruited from a closed Breast Cancer Now Facebook group and the support group Cancer and Fertility UK also provided feedback on CFM via an online survey.ResultsA 60-page paper prototype of the Cancer, Fertility and Me patient decision aid was initially developed. Alpha testing of the resource found that overall, it was acceptable to cancer patients, healthcare professionals and key stakeholders and it was considered a useful resource to support fertility preservation treatment decision-making. However, the healthcare professionals felt that the length of the patient decision aid, and elements of its content may be a barrier to its use. Subsequently, the prototype was reduced to 40 pages. During beta testing of the shortened version in routine care, women who received the resource described its positive impact on their ability to make fertility preservation decisions and support them at a stressful time. However, practical difficulties emerged which impacted upon its wider dissemination in clinical practice and limited some elements of the evaluation planned.DiscussionWomen receiving the decision aid within the cancer treatment pathway found it helped them engage with decisions about fertility preservation, and make better informed, values-based care plans with oncology and fertility teams. More work is needed to address access and implementation of this resource as part of routine oncology care pathways.

Fertility Preservation in Young Women with Breast Cancer: Impact on Treatment and Outcomes.

The impact of chemotherapy timing on the fertility preservation (FP) decision is poorly understood. Here we evaluate factors associated with FP completion among women age ≤ 45 years with breast cancer who received chemotherapy and consulted with a reproductive endocrinology and infertility (REI) specialist, and report pregnancy and oncologic outcomes. This retrospective review included all women age ≤ 45 years diagnosed with stage I-III unilateral breast cancer at Memorial Sloan Kettering Cancer Center between 2009 and 2015 who received chemotherapy and consulted with an REI specialist. Clinicopathologic features and factors associated with the decision to undergo FP were analyzed, and comparisons were made with the Wilcoxon rank-sum test, Chi-square test, or Fisher's exact test. Survival curves were constructed using the Kaplan-Meier method. Among the 172 women identified, median age was 34 years (interquartile range 31-37 years). The majority of women were single (n = 99, 57.6%) and nulliparous (n = 134, 77.9%). Most women underwent FP (n = 121, 70.3%). Factors associated with the decision to undergo FP included younger median age (33 vs. 37 years, p < 0.001), having private insurance (p < 0.001), nulliparity (p < 0.001), and referral from Breast Surgery (p = 0.004). Tumor characteristics and treatments were similar between women who underwent FP and those who declined. Overall survival and recurrence-free survival were also similar between groups. Women who underwent FP were more likely to have a biological child after breast cancer treatment. Women underwent FP at high rates independent of timing of chemotherapy and oncologic factors. FP is associated with having a biological child and does not compromise oncologic outcomes.

Fertility preservation decisions and outcomes of young women with breast cancer.

e12520 Background: As breast cancer (BC) survival improves, fertility preservation (FP) counselling prior to initiating gonadotoxic chemotherapy for women of child-bearing age becomes more important. This study explores the factors that influence the decisions to pursue FP before and after breast cancer treatment and the FP outcomes. Methods: An IRB approved web-based survey examining decisions about FP, factors influencing decisions, and post-decision regret was administered to English and Spanish speaking women (age 18-45) diagnosed with stage I-III BC. All women received education and counselling by a MSK Fertility Nurse Specialist prior to initiating cancer treatment at MSKCC in 2009-2017. Additional data was extracted from the medical record. Results: 211 women with BC (82% ER+, 19% HER-2+, 12% triple negative) with a mean age of 34 (age range 20-45) participated in this study. At the time of diagnosis 128 (61%) women were married/living with partner and 46 (22%) women had children. 151 (72%) wanted (additional) children, 48 (23%) were unsure if they wanted (additional) children and 12 (6%) did not want (additional) children. Of the 151 women who desired (additional) children, 94 underwent FP pre-treatment and 3 post-treatment. Of 48 unsure women, 14 underwent FP. A total of 115 women underwent FP before treatment: 73 froze eggs and 49 froze embryos. After treatment 28 (13%) women met with a reproductive endocrinologist and 13 underwent FP: 9 froze eggs and 4 froze embryo. The average number of eggs frozen was 14 pre-treatment and 18 post-treatment. The average number of embryos frozen was 7 both pre- and post-treatment. After completing primary breast cancer treatment, 61 women opted to try to build their family and 42 had children: 35 gave birth and 7 used a surrogate. In a multivariate analysis lower socioeconomic status and non-white race were predictive of discordance between desire for FP and completion of FP before treatment (p &lt; 0.05). 65% of patients reported cost of freezing eggs/embryos was important in their decision. Insurance did not cover any FP treatment for 56/115 (49%) of women and 34% (39/115) of women paid $10,000 or more for their FP. Participants reported the ability to feel hopeful about their future (82%) and fear of regret (80%) were the most important factors when making their FP decision. 83% (176/211) of women believe they made the right FP decision and 80% would make the same decision again. Women had less regret if they underwent FP. Conclusions: Our study demonstrates the importance of discussing FP with women with BC of child-bearing age, regardless of race or economic status. Fertility preservation is often successful in women with BC. Regardless of pregnancy outcomes, women felt that having FP offered them a sense of control and hope for the future during a vulnerable time in their lives with low risk of regret.

Navigating parent-child disagreement about fertility preservation in minors: scoping review and ethical considerations.

Offering fertility preservation (FP) prior to gonadotoxic therapy, including cancer care and gender-affirming treatment, is now considered standard of care. Periodically, parents and children disagree about whether to pursue FP. However, it is unknown how often this occurs and how disagreement is handled when it arises. Moreover, there is no clear guidance on how to resolve these difficult situations. The purpose of this scoping review is to provide an overview of available research evidence about parent-child disagreement regarding FP in order to establish that disagreement occurs in practice, understand the basis for disagreement and explore suggestions for how such disputes could be resolved. Based on our findings, we offer a discussion of the ethical principles at stake when disagreement occurs, which can be used to guide clinicians' approaches when these challenging scenarios present. A comprehensive literature search was run in several databases, including PubMed/Medline, Embase and the Cochrane Library. The search was performed in February 2021 and updated in August 2021. Articles were included in the final review if they discussed how parents or children wanted their views on FP taken into account, presented evidence that parent-child discordance regarding FP exists, discussed how to handle disagreement in a particular case or offered general suggestions for how to approach parent-child discordance about FP. Studies were excluded if the patients were adult only (age 18 years and older), pertained to fertility-sparing treatments (e.g. gonad shielding, gonadopexy) rather than fertility-preserving treatments (e.g. testicular tissue cryopreservation, ovarian tissue cryopreservation, oocyte cryopreservation or sperm cryopreservation) or explored the views of clinicians but not patients or parents. Meta-synthesis was used to synthesize and interpret data across included studies and thematic analysis was used to identify common patterns and themes. In total, 755 publications were screened, 118 studies underwent full-text review and 35 studies were included in the final review. Of these studies, 7 discussed how parents or children wanted their opinions to be incorporated, 11 presented evidence that discordance exists between parents and children regarding FP, 4 discussed how disagreement was handled in a particular case and 21 offered general suggestions for how to approach parent-child disagreement. There was a range of study designs, including quantitative and qualitative studies, case studies, ethical analyses and commentaries. From the thematic analysis, four general themes regarding FP disagreement emerged, and four themes relating to the ethical principles at stake in parent-child disagreement were identified. The general themes were: adolescents typically desire to participate in FP decision-making; some parents prefer not to involve their children; minors may feel more favorably about FP than their parents; and transgender minors and their parents may have unique reasons for disagreement. The ethical principles that were identified were: minor's best interest; right to an open future; minor's autonomy; and parental autonomy. This study offers an overview of available research on the topic of parent-child disagreement regarding FP and discusses the ethical considerations at stake when disagreement occurs. The findings can be used to inform guidance for clinicians presented with FP disagreement in practice.