Faculty Bibliography

PURPOSE/OBJECTIVE:Today, male and female adult and pediatric cancer patients, individuals transitioning between gender identities, and other individuals facing health extending but fertility limiting treatments can look forward to a fertile future. This is, in part, due to the work of members associated with the Oncofertility Consortium. METHODS:The Oncofertility Consortium is an international, interdisciplinary initiative originally designed to explore the urgent unmet need associated with the reproductive future of cancer survivors. As the strategies for fertility management were invented, developed or applied, the individuals for who the program offered hope, similarly expanded. As a community of practice, Consortium participants share information in an open and rapid manner to addresses the complex health care and quality-of-life issues of cancer, transgender and other patients. To ensure that the organization remains contemporary to the needs of the community, the field designed a fully inclusive mechanism for strategic planning and here present the findings of this process. RESULTS:This interprofessional network of medical specialists, scientists, and scholars in the law, medical ethics, religious studies and other disciplines associated with human interventions, explore the relationships between health, disease, survivorship, treatment, gender and reproductive longevity. CONCLUSION/CONCLUSIONS:The goals are to continually integrate the best science in the service of the needs of patients and build a community of care that is ready for the challenges of the field in the future.

Purpose of review/UNASSIGNED:Until recently, sexual and gender minority (SGM) people have been largely invisible in health care and health services research. However, understanding the needs and experiences of SGM cancer patients is critical to providing high-quality care, including needs and experiences related to sexual health. In this narrative review, we highlight that the literature on sexual health for SGM people with cancer is lacking, summarize existing literature on disparities affecting SGM patients with cancer, and discuss factors associated with these disparities. We conclude with recommendations and suggestions for future research in this area. Recent Findings/UNASSIGNED:Emerging evidence suggests that SGM people are at a higher risk for breast, cervical, endometrial, HPV-related, and lung cancers, as well as poor cancer outcomes, due to behavioral risk factors and health care system factors (e.g. lower access to health care insurance, discrimination in non-affirming care settings, negative health care interactions with providers). Additional research suggests that lack of clear guidelines for cancer screening in SGM patients, particularly for transgender and gender diverse patients, negatively impacts cancer screening uptake among SGM people. A growing number of studies have suggested greater sexual challenges following cancer treatment for sexual minority men with prostate cancer, while other studies highlight positive outcomes for sexual minority women following cancer treatment, such as benefit finding and resilience. Research on transgender and gender diverse patients is lacking. Summary/UNASSIGNED:Collection of sexual orientation and gender identity data across clinical enterprises and population-based surveys, mandatory health care provider training on cultural and clinical competency with SGM patients, and additional research inclusive of and focused on SGM cancer patients are key strategies to advance evidence-based clinical cancer care for diverse SGM populations.

PURPOSE/UNASSIGNED:Biobanks usually do not collect transgender and gender-diverse (TGD) demographic information, hindering research on cancer risk and biological effects related to gender-affirming interventions. METHODS/UNASSIGNED:In August 2019, 172 scientists involved in biobanking research at a single institution (H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL) were invited to complete a survey measuring knowledge and attitudes about TGD health and research practices. Quantitative and qualitative analyses were performed. RESULTS/UNASSIGNED:< .001). Qualitative analysis of open-ended questions indicated overall support of TGD data inclusion in biobanks along with perceived barriers to inclusion of such data in biobanks. CONCLUSION/UNASSIGNED:To our knowledge, this was the first study of researchers to assess knowledge, attitudes, and research practices regarding TGD patients. Overall, there was limited knowledge about TGD health and cancer needs and low rates of TGD demographic data collection but a high interest in receiving education regarding this community.

Oncofertility has evolved over the years, with a prodigious amount of research documenting the importance of fertility for young patients with cancer, and the potential impact that fertility impairments due to cancer treatments has on their Quality of Life (QoL). Multiple professional bodies and scientific societies have included fertility as an integral part of clinical management. Clinical guidelines advocate that health professionals have the duty to discuss the risk of infertility and fertility preservation options as early as possible and refer to fertility specialists when appropriate. Collectively, fertility decisions are regarded as difficult for both patients and providers. Since providing fertility-related information is vital for better decision making, researchers and policy makers have concentrated their efforts in developing educational tools to aid decisions and guidelines to optimize the delivery of this information, focusing mainly on patients-providers and largely neglecting the role and influence that partners play in this process. Here, we reflect on the importance of partners in fertility decisions, with a focus on the provision of fertility-related information that is also geared towards partner. We highlight the need to involve partners in fertility discussions, and that their needs should be taken into account in both clinical guidelines and in the development of educational tools, for an optimal decision-making process.

OBJECTIVE:Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. METHODS:Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients' and HCPs' concerns regarding their experiences discussing genetics and FP. RESULTS:The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients' emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient-provider interaction or patient testimonial. CONCLUSION/CONCLUSIONS:AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.