Faculty Bibliography

As the technology for ectogenesis continues to advance, the ethical implications of such developments should be thoroughly and proactively explored. The possibility of full ectogenesis remains hypothetical at present, and myriad concerns regarding the safety and efficacy of the technology must be evaluated and addressed, while pressing moral considerations should be fully deliberated. However, it is conceivable that the technology may become sufficiently well established in the future and that eventually full ectogenesis might be deemed ethically acceptable as a reproductive alternative to gestation within a human womb under certain circumstances. If the safety and efficacy of full ectogenesis are established, if ethical dilemmas are sufficiently well addressed, and if the technology is offered as a reproductive option to cisgender heterosexual individuals or couples desiring to become parents, there is a moral obligation grounded in social justice to ensure that full ectogenesis be made available to individuals or couples identifying as members of sexual- or gender-minority groups who likewise seek to pursue parenthood. We examine the history of access to current family-building options, including assisted reproductive technology, surrogacy and adoption, for these populations and conclude that in the absence of robust empirical evidence suggesting an increased risk of harm to children of individuals and couples who identify as members of sexual- or gender-minority groups, equitable access to ectogenesis as a pathway to parenthood for sexual and gender minorities must be assured as a matter of reproductive justice.

PURPOSE/OBJECTIVE:The aim of the study was to examine reproductive health attitudes and behaviors related to contraception use, provider counseling, parenthood goals, and fertility preservation (FP) in TNB adolescents. METHODS:A 24-item survey was administered to 44 TNB adolescents aged 12-19 years. RESULTS:Contraceptive use was variable even among the 46% who reported sexual activity. Half denied or were unsure if they had been offered options from their provider to prevent sexually transmitted infections, and more than one third denied or were unsure about the offer of pregnancy prevention options. Importantly, the majority did not desire more information about contraceptive options. Few used FP, although many thought their feelings about parenthood may change in the future. CONCLUSIONS:TNB adolescents are at risk for sexually transmitted infections, unplanned pregnancies, and future infertility, yet many do not desire more information about contraception or FP. Tailored counseling strategies should be developed and researched to protect this vulnerable group of youth.

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.

BACKGROUND:For the advancement of cancer research, the collection of tissue specimens from drug-resistant tumors after targeted therapy is crucial. Although patients with lung cancer are often provided targeted therapy, post-therapy specimens are not routinely collected due to the risks of collection, limiting the study of targeted therapy resistance mechanisms. Posthumous rapid tissue donation (RTD) is an expedient collection process that provides an opportunity to understand treatment-resistant lung cancers. METHODS:Consent to participate in the thoracic RTD protocol was obtained during patient care. When death occurred, tumor and paired non-tumor, cytology, and blood specimens were collected within 48 hours and preserved as formalin-fixed and frozen specimens. Tissue sections were evaluated with hematoxylin and eosin staining and immunohistochemistry (IHC) against multiple biomarkers, including various programmed death ligand 1 (PD-L1) clones. Next-generation sequencing was performed on 13 specimens from 5 patients. RESULTS:Postmortem specimens (N = 180) were well preserved from 9 patients with lung cancer. PD-L1 IHC revealed heterogeneity within and between tumors. An AGK-BRAF fusion was newly identified in tumor from a donor with a known echinoderm microtubule-associated protein-like 4 to anaplastic lymphoma kinase (EML4-ALK) fusion and history of anaplastic lymphoma kinase (ALK) inhibitor therapy. RNA expression analysis revealed a clonal genetic origin of metastatic cancer cells. CONCLUSIONS:Post-therapy specimens demonstrated PD-L1 heterogeneity and an acyl glycerol kinase to B-rapidly accelerated fibrosarcoma (AGK-BRAF) fusion in a patient with an EML4-ALK-positive lung adenocarcinoma as a potential resistance mechanism to ALK inhibitor therapy. Rapid tissue donation collection of postmortem tissue from lung cancer patients is a novel approach to cancer research that enables studies of molecular evolution and drug resistance.

BACKGROUND:Lesbian, gay, bisexual, and transgender (LGBT) cancer patients experience substantial health disparities, including poorer overall health and lower satisfaction with their cancer care than their heterosexual and cisgender counterparts, which may be due in part to a lack of culturally competent providers. To address these disparities, a web-based LGBT cultural competency training tailored to oncologists was developed by an interdisciplinary team of scientists, LGBT cancer survivors, cultural competency experts, oncologists, a web designer, and an instructional designer. METHODS:Oncologists (n = 44) were recruited from 3 academic cancer centers in Florida. Participants were administered the LGBT cultural competency training Curriculum for Oncologists on LGBT populations to Optimize Relevance and Skills (COLORS) and completed pre- and posttraining measures regarding LGBT-related knowledge, attitudes (including general negative attitudes and health care-related attitudes), and clinical practices. After the training, participants completed training acceptability measures. RESULTS:Of the 44 participants, 33 (75%) completed the COLORS training. Participants were 55% non-Hispanic white, 63% male, and had a mean age of 47 years. Participants demonstrated significant improvements in LGBT-related knowledge (t = -4.9, P < .001), attitudes (Z = -3.0, P = .002; t = -2.5, P = .019), and clinical practices (Z = -3.5, P < .001) after completing the COLORS training (Wilcoxon signed rank tests were used for nonnormally distributed variables). Moreover, training acceptability was high, with 82% of participants rating the training as high quality, and 97% being willing to recommend the training to a colleague. CONCLUSION/CONCLUSIONS:The COLORS training is both feasible to administer and acceptable for use with oncologists, and may improve oncologists' LGBT-related knowledge, attitudes, and clinical practices. Larger trials are needed to examine the training's effectiveness in reducing LGBT cancer disparities, as well as its applicability to other types of care providers.

The shift from adolescence to adulthood is marked by increased independence from parents. The purpose of this research is to describe types of beneficial support and concordance between young adult cancer patients/survivors and their parents. One-on-one phone interviews were conducted. Data were analyzed with constant comparison and linguistic methods. Fifteen patients and eight mothers participated. Support types most cited included informational, tangible, and emotional. The greatest difference between patients and mothers was in mention of emotional or tangible support. Continued attention to the role of parental support for young adult cancer patients is important for care.

Background/UNASSIGNED:"Expectancies," or beliefs about outcomes, robustly correlate with and predict several behaviors including electronic nicotine delivery system ("e-cigarette") use. However, there is limited qualitative research available regarding relevant e-cigarette vaping expectancies. Objectives/UNASSIGNED:The present study used a qualitative approach to derive and refine e-cigarette expectancy themes among young adults. Methods/UNASSIGNED:, cigarette smokers, and dual users to assess beliefs about the effects of e-cigarettes. After a series of open-ended questions, follow-up questions assessed reactions to domains previously examined in expectancy measures for cigarette smoking and e-cigarette vaping. The constant comparative method was used to derive themes from transcripts. Results/UNASSIGNED:: Health Risks, Addiction, Secondhand Effects). Conclusions/importance/UNASSIGNED:Previously identified smoking expectancies appear relevant for young adult vaping, with some notable refinements. Positive reinforcement aspects encompassed aerosol clouds, vaping tricks, and unique flavors. Social benefits included influencing others via social media and competitive activity, as well as the convenience of use in a variety of places. Negative affect reduction was controversial among user groups, but vaping was seen as more interesting than smoking and thus more effective at boredom reduction. Young adults were uncertain regarding negative consequences, but appreciated a potential for secondhand effects. Measure refinement via qualitative research and future field testing can enhance our understanding of this relatively new behavior, supporting tobacco control surveillance, marketing/labeling regulations, and counter-advertising development/evaluation.

PURPOSE/OBJECTIVE:The National Comprehensive Cancer Network (NCCN) created guidelines to facilitate implementation of fertility preservation (FP) discussions and referrals for adolescent and young adult patients. We assessed if availability of workplace FP resources and referral policies differed among learners in the Educating Nurses about Reproductive Health in Cancer Healthcare (ENRICH) training program based on NCCN membership. METHODS:Learners completed a baseline application, including demographic information and the availability of FP resources and referral policies. Learners were categorized as either NCCN members or non-members and chi-square tests compared resources between the two groups. RESULTS:Learners from NCCN institutions reported the highest rates of established FP referral guidelines (p < .01), reproductive endocrinologist and infertility specialist (REI) on staff (p < .01), partnerships with REI, educational materials for staff (p < .05), and patients (p < .01). CONCLUSION/CONCLUSIONS:FP resources and referral policies were highest among learners from NCCN member institutions, but areas for development with fertility issues still exist and learners from non-member institutions may assist their workplaces in improving rates of discussions and referrals based on their ENRICH training. PRACTICE IMPLICATIONS/CONCLUSIONS:The variation of available resources and referral policies between groups suggests more FP education and training; focusing on implementation programs is needed to make steps towards impactful institutional level resources and policies.

PURPOSE/OBJECTIVES:Young adult cancer patients undergo stress at a time when their primary source of psychosocial support may be changing. Our goal was to provide insight into the expectations young adult patients and their family caregivers for types of psychosocial support. RESEARCH APPROACH:Semi-structured interviews. PARTICIPANTS:Fifteen patients, 9 caregivers recruited from an AYA clinic. Methodological Approach: Thematic content analysis using the constant comparison method. FINDINGS:Two themes were identified. First, families described coordinating support around strengths to determine who would take on caregiving roles/tasks. Second, families described the importance of patient-caregiver relationship status/history in determining trust and expectations. INTERPRETATION:Family strengths and existing relationships can impact caregiving roles and expectations for families of young adult cancer patients. Implications for Psychosocial Providers: Cancer clinics may need to involve members of the psychosocial provider team to better understand the family dynamics of their patients and how these relate to support.

Infertility is known to decrease quality of life among adults. In some cases, infertility is caused by medical conditions and/or treatments prescribed in childhood, and using methods to protect or preserve fertility may expand future reproductive possibilities. Structured programs to offer counseling about infertility risk and fertility preservation options are essential in the care of pediatric patients facing fertility-threatening conditions or treatments, yet multiple barriers to program development exist. This report was developed from the institutional experiences of members of the Pediatric Initiative Network of the Oncofertility Consortium, with the intent of providing guidance for health care providers aiming to establish programs at institutions lacking pediatric fertility preservation services. The mechanics of building a fertility preservation program are discussed, including essential team members, target populations, fertility preservation options (both established and experimental), survivorship issues, research opportunities, and ethical considerations. Common barriers to program development and utilization, including low referral rates and financial concerns, are also discussed, and recommendations made for overcoming such barriers.