Faculty Bibliography

PURPOSE/OBJECTIVE:Research among adults shows benefits and low perceived burden of engaging in behavioral research. However, questions remain regarding the ethics of conducting behavioral research in pediatric populations during sensitive situations, including during a new life-threatening diagnosis or at end-of-life. We examined reactions to participating in a behavioral reproductive research study among male adolescents newly diagnosed with cancer and their parents, as a step towards optimizing fertility preservation utilization in a population where future infertility is common. METHODS:Pediatric literature regarding the ethics of behavioral research was reviewed. In our pilot, forty-four participants (19 mothers, 11 fathers, 14 male adolescents newly diagnosed with cancer) from 20 families completed demographic questionnaires and a fertility preservation decision tool developed by the study team. Qualitative interviews exploring the impact of study participation were subsequently conducted. Verbatim transcripts were coded for thematic content using the constant comparison method. RESULTS:Literature review showed positive reactions to research participation among youth/caregivers. In our pilot study, 89% (n = 17) of mothers, 64% (n = 7) of fathers, and 71% (n = 10) of adolescents reported at least one benefit of participating. Eleven percent (n = 2) of mothers, 36% (n = 4) of fathers, and 29% (n = 4) of adolescents said they were not affected; none of the participants reported a negative effect. CONCLUSION/CONCLUSIONS:Consistent with prior literature, our study suggests behavioral reproductive research prior to cancer treatment can offer direct benefits to participants and society, without increasing burden. These findings will inform future interventions to improve long-term psychosocial and reproductive outcomes for youth with cancer.

INTRODUCTION/BACKGROUND:Young patients with breast cancer may face impaired fertility due to cancer treatments, which often leads to complex fertility decisions. To aid fertility decision-making, it is crucial that women have access to high-quality information; however, their fertility information needs are often unmet. Decision aids (DAs) are educational materials to assist with decision-making, by addressing individual values and preferences. In oncofertility, DAs may constitute a valuable resource to help patients obtain information and make better informed decisions. This paper reports on the protocol of the development and transcreation of a fertility-related DA booklet to support young Portuguese patients with breast cancer, originally developed and validated for an Australian audience. METHODS AND ANALYSIS/UNASSIGNED:Recent literature on clinical guidelines will be reviewed. A summary of these guidelines will be created and will inform the first round of DAs revisions. A forward translation process will translate the DA from Australian English to Portuguese. A multidisciplinary Portuguese experts panel will revise and give feedback on the scientific and cultural aspects of the DA content for Portuguese audience. Next, a backward translation process will assess content equivalence between the original and the final adapted version. Finally, Learner Verification (LV) will be used in a qualitative study of young patients with breast cancer and their partners. Two focus groups with 6-10 participants each will be conducted with: (1) recently diagnosed young patients with breast cancer; (2) breast cancer survivors and (3) their partners. Results from the DA acceptability assessment will inform its final version. Data will be analysed using content analysis and constant comparison method to identify key themes/textual units related to LV. ETHICS AND DISSEMINATION/UNASSIGNED:Ethical approval was granted by the Portuguese Institute of Oncology Porto. Results will be disseminated through peer-reviewed journals and presented at scientific meetings for academic and health professionals audiences.

Hypertrophic cardiomyopathy (HCM) affects 1 in 200 people and is the most common cause of sudden cardiac death in the young. Given that HCM usually is inherited in an autosomal dominant pattern, an HCM diagnosis has implications for biologically related family members. The purpose of this study was to explore probands' disclosure of an HCM diagnosis with these biologically related, at-risk family members. An online survey was posted on the website of the Hypertrophic Cardiomyopathy Association (HCMA), an advocacy and support group for HCM patients and their families. Descriptive statistics were used to summarize responses to closed-ended questions and demographics. Using an iterative content analysis with the constant comparison approach, we analyzed the responses to open-ended questions inquiring about the nature and role of disclosure communication with at-risk relatives. A total of 315 individuals with a self-reported diagnosis of HCM completed the survey. Most participants (98%) disclosed their diagnosis to at-risk family members. Sixty-four percent disclosed to family members less than 1 year after diagnosis. Participants also disclosed potential treatment options (74.6%) and the emotional impact of the diagnosis (39%). HCM specialists were ranked by participants as being the most helping in explaining the benefit of genetic counseling, while genetic counselor were ranked as least helpful. Emerging themes address the need to encourage screening and genetic testing among family members and to identify external educational resources for use during the disclosure process. Importantly, our study found that the process of disclosure varies based on individuals' experiences and family communication dynamics. However, almost all participants expressed the importance of disclosing the diagnosis of HCM as well as the importance of being screened and expressed needs for additional support during the disclosure process.

We used the Health Belief Model (HBM) to explore factors associated with readiness for genetic counseling among breast cancer survivors. Breast cancer survivors meeting NCCN genetic counseling referral criteria completed questionnaires capturing demographic and clinical information and factors guided by the HBM, including health beliefs, psychosocial variables, and cues to action. Using logistic regression, we examined whether the above variables differed based on readiness group (pre-contemplators, who did not plan to make a genetic counseling appointment, and contemplators, who planned to make a genetic counseling appointment in the next 1-6 months). Of 111 participants, 57% were pre-contemplators and 43% were contemplators. Higher cancer worry was associated with increased odds of being a contemplator (OR = 2.99; 95% CI = 1.37-6.54) and higher perceived barriers to genetic counseling were associated with decreased odds of being a contemplator (OR = 0.31; 95% CI = 0.11-0.85). Those who reported a family member encouraged them to get tested were more likely to be contemplators (OR = 3.57; 95% CI = 1.19-10.70). Our results suggest key factors for predicting genetic counseling readiness include cancer worry, perceived barriers, and family influence. There is need for increased genetic counseling awareness. Better understanding of factors related to survivors' decisions about counseling can inform tailored interventions to improve uptake and ultimately reduce cancer recurrence risk.

PURPOSE/OBJECTIVE:To identify potential gaps in attitudes, knowledge, and institutional practices toward lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) patients, a national survey of oncologists at National Cancer Institute-Designated Comprehensive Cancer Centers was conducted to measure these attributes related to LGBTQ patients and desire for future training and education. METHODS:A random sample of 450 oncologists from 45 cancer centers was selected from the American Medical Association's Physician Masterfile to complete a survey measuring attitudes and knowledge about LGBTQ health and institutional practices. Results were quantified using descriptive and stratified analyses and by a novel attitude summary measure. RESULTS:Of the 149 respondents, there was high agreement (65.8%) regarding the importance of knowing the gender identity of patients, which was contrasted by low agreement (39.6%) regarding the importance of knowing sexual orientation. There was high interest in receiving education regarding the unique health needs of LGBTQ patients (70.4%), and knowledge questions yielded high percentages of "neutral" and "do not know or prefer not to answer" responses. After completing the survey, there was a significant decrease ( P < .001) in confidence in knowledge of health needs for LGB (53.1% agreed they were confident during survey assessment v 38.9% postsurvey) and transgender patients (36.9% v 19.5% postsurvey). Stratified analyses revealed some but limited influence on attitudes and knowledge by having LGBTQ friends and/or family members, political affiliation, oncology specialty, years since graduation, and respondents' region of the country. CONCLUSION/CONCLUSIONS:This was the first nationwide study, to our knowledge, of oncologists assessing attitudes, knowledge, and institutional practices of LGBTQ patients with cancer. Overall, there was limited knowledge about LGBTQ health and cancer needs but a high interest in receiving education regarding this community.

Uterus transplantation is an emerging technology adding to the arsenal of treatments for infertility; specifically the only available treatment for uterine factor infertility. Ethical investigations concerning risks to uteri donors and transplant recipients have been discussed in the literature. However, missing from the discourse is the potential of uterus transplantation in other groups of genetically XY women who experience uterine factor infertility. There have been philosophical inquiries concerning uterus transplantation in genetically XY women, which includes transgender women and women with complete androgen insufficiency syndrome. We discuss the potential medical steps necessary and associated risks for uterus transplantation in genetically XY women. Presently, the medical technology does not exist to make uterus transplantation a safe and effective option for genetically XY women, however this group should not be summarily excluded from participation in trials. Laboratory research is needed to better understand and reduce medical risk and widen the field to all women who face uterine factor infertility.

PURPOSE/OBJECTIVE:Approximately half of all males experience fertility impairment after cancer treatment, which can diminish quality of life. Parents are often responsible for sharing health-related information, and parental recommendation strongly impacts fertility-related decisions; yet it remains unclear whether adolescents and young adults' (AYAs) and their parents' fertility-related goals/attitudes align. This study examined parent-AYAs congruence on fertility-related attitudes and (grand) parenthood goals during survivorship, and if parents were aware of their sons' parenthood goals and reproductive concerns. METHODS:Males (15-25 years) and their parents were recruited within 1-8 years of completing cancer treatment. Based on the Health Belief Model, AYAs (N = 38), mothers (N = 33), and fathers (N = 24) reported on parenthood goals, perceived benefits/barriers of fertility testing/preservation, perceived susceptibility/severity of infertility, and fertility knowledge. Analyses included Pearson's correlations and paired-sample t-tests. RESULTS:More than 80% of mothers, fathers, and AYAs desired future (grand) children. Mother-son dyads had differences in fertility knowledge (p = 0.037), and father-son dyads differed in parenthood goals (p = 0.024). AYAs perceived more fertility-related barriers than their mothers (p = 0.014) and fathers (p = 0.006). AYA survivors were less likely to report they could accept a life without a biological child compared with their mothers (p = 0.009) and fathers (p = 0.024). CONCLUSIONS:These findings suggest some similarities, yet important differences between male AYA survivors' and their parents' attitudes toward fertility and parenthood. As infertility is common in this population, and is associated with uncertainty and distress, these findings underscore the need for family-centered fertility-related interventions at the time of cancer diagnosis and throughout survivorship.