Faculty Bibliography

Adolescents and young adults with a cancer diagnosis face unique challenges during treatment and into survivorship related to fertility and family building. This review provides an updated overview of the impact of cancer and its associated treatments, including novel treatments in male and female fertility. An overview of fertility preservation and family building options, including experimental options, is also provided.

Objective: To identify the current state of knowledge among adolescent and young adults (AYAs) with sickle cell disease (SCD) on fertility, family building, and contraception. We aimed to identify recommendations and guidance for communication strategies and counseling methods in these areas. Design: Full-text publications were included if they focused on individuals with SCD, were published in English in peer-reviewed journals, and addressed patient or family knowledge of fertility, family building, or contraception. A comprehensive search using PubMed, CINAHL, Ovid MEDLINE, Embase, and PsycINFO was performed. Multiple reviewers independently assessed each abstract for inclusion, and a senior librarian resolved disagreements. Results: Of 2,885 publications screened, 314 underwent full review, and 11 were included. Of the included studies, three discussed fertility only, two discussed family building only, two discussed contraception only, two discussed contraception and fertility, one discussed contraception and family building, and one discussed fertility and family building. Two overarching gaps were identified: a lack of counseling related to reproductive healthcare provided to AYAs with SCD and limited knowledge regarding their own disease sequelae. Conclusion: Many AYAs are not counseled and are not knowledgeable about their fertility risks, family building options, and contraception choices. Furthermore, previous counseling guidelines on these subjects are limited, leading to incomplete and highly variable discussions between patient and clinicians on these subjects. This review highlights counseling recommendations and areas in which more concrete guidelines and evidence are important for the standardization of comprehensive reproductive healthcare in the AYA SCD population.

PURPOSE/OBJECTIVE:Prior to cancer treatment, patients make decisions on whether to undergo fertility preservation (FP) and the method of FP. We sought to learn more about counseling and decision-making on the method of cancer-related FP. METHODS:A cross-sectional 26-item online survey was administered to patients with ovaries who underwent cancer-related FP. Associations between demographics and the FP method were made through estimates of risk difference, with a 95% confidence interval. Open-ended responses were analyzed using the constant comparative method. RESULTS:A total of 240 respondents completed the survey: 52% underwent oocyte cryopreservation (OC), 29% underwent embryo cryopreservation (EC), and 19% underwent both oocyte and embryo cryopreservation (OC/EC). Most respondents agreed that if they were to go through the process again, they would make the same decision about FP (80% EC, 72% OC, 59% OC/EC). Women ≥ 35 years reported being counseled more that embryos were superior compared to younger women (risk difference 46%, CI 32.8, 59.1), however were not more likely to freeze embryos (risk difference 6.2%, CI - 9.8, 22.2). Women in long-term relationships reported they were counseled more that embryos were superior compared to those single/dating (risk difference 27%, CI 18.1, 35.9). All women in long-term relationships reported undergoing EC, while the majority of single/dating women reported undergoing OC (74.6%). CONCLUSION/CONCLUSIONS:Most women who have undergone cancer-related FP reported they would choose the same FP method again. Women in long-term relationships or ≥ 35 years reported they were more likely to be counseled that EC is superior; however, only women in long-term relationships were more likely to freeze embryos.

Lesbian, gay, bisexual, transgender, queer/questioning, or other sexual and/or gender expansive identities (LGBTQ+) in the United States are facing an insurmountable reintroduction of discriminatory and stigmatizing policies and legislation (i.e., Zombie Laws) particularly those pertaining to sexual practices, minoritized sexual orientations and gender identities, and access to equitable healthcare. This has a particularly devastating effect on cancer-related care and outcomes. Therefore, a call to action among researchers, policymakers, and activists is needed to protect LGBTQ + rights and ensure gains continue to ameliorate cancer-related health disparities.

OBJECTIVE/UNASSIGNED:Families or loved ones of adolescents and young adults (AYA) with a poor cancer prognosis who preserved fertility and did not survive treatment may choose to pursue posthumous assisted reproduction (PAR; i.e., use of preserved reproductive material for future family-building attempts). Decisions about PAR may be occurring in the context of grief and bereavement, which is associated with ethical and psychological considerations because grief can complicate a person's capacity for informed decision-making. METHODS/UNASSIGNED:Through the use of a five-step ethical decision-making model, the American Psychological Association's Ethical Principles of Psychologists and Code of Conduct, and a blended case example, the ethical and psychological considerations for families of AYA with poor prognosis who pursue PAR is discussed with an ethical analysis. RESULTS/UNASSIGNED:Ethical and psychological considerations included assessing the potential for harm to involved parties, navigating PAR decision-making with responsibility and honesty, examining the accessibility of PAR, and considering informed consent/assent and autonomy. CONCLUSIONS/UNASSIGNED:Clinical recommendations for supporting families and loved ones exploring PAR in the context of grief were discussed, with considerations for improving clinicians' comfort and competence with PAR, incorporating grief into informed consent conversations, standardizing conversations about PAR, and promoting an interdisciplinary approach to PAR-related decisions.

In goals of care conversations and through the care trajectory, to avoid insensitive or discriminatory care, it is vital clinicians recognize lesbian, gay, bisexual, transgender, queer+ patients' values and wishes. In clinical settings, implicit bias operating within unconscious awareness may challenge the commitment to equitable care, negatively affecting patient outcomes. In this composite case, during a conversation with a social worker/nurse team, a cisgender woman repeatedly expressed her wishes for her female partner to be her decision maker instead of her biological family. The conversation stalled during the patient's attempts to identify her partner as her most valued and trusted person. Interviewer follow-up responses based on motivational interviewing techniques, which do not include strategies for lesbian, gay, bisexual, transgender, queer+ interactions, inaccurately reflected the patient's needs. Two ethical issues emerged, (1) autonomy and (2) beneficence. Clinicians should approach all patients using nongendered language, and allow patients to self-identify and decide which people are in their support system. Lack of inclusivity training has significant potential to affect the patient experience and decrease clinician/patient trust. Clinicians should not assume the decision maker is a cisgender, heterosexual partner or a biological family member. When patients speak about their partners, it is imperative clinicians use the patient's language and not avoid or redirect responses.

IN BRIEF/UNASSIGNED:Transgender and gender diverse (TGD) youth demonstrate low utilization of fertility preservation before medical and surgical gender-affirming interventions. However, a significant number of TGD youth have goals for parenthood and/or recognize that their attitude toward future family-building goals may change over time. In this narrative review, we conclude that TGD young people should have ongoing opportunities to discuss their family-building goals and options for fertility preservation. Validated decision tools can help facilitate these discussions. ABSTRACT/UNASSIGNED: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.