Faculty Bibliography

OBJECTIVE: Offering fertility preservation (FP) prior to gonadotoxic therapy is standard of care. Periodically, parents and children disagree about whether to pursue FP for the minor. This study reviews existing literature on parent-child disagreements regarding FP, weighs relevant rights and interests, and offers recommendations for how to navigate these ethically challenging situations. MATERIALS AND METHODS: The scoping review follows the PRISMA-ScR checklist and is registered with the Open Science Framework. A comprehensive literature search was performed in February 2021. Abstracts were screened using Covidence based on predefined criteria. Full-text articles were assessed for: 1) evidence that parentchild discordance about FP exists, 2) data on how parents or children want their views incorporated, 3) examples of how discord has been resolved, or 4) suggestions for how to handle discordance. For the ethical analysis, rights and interests identified in the review were explored and recommendations for resolving disagreement were developed.
RESULT(S): 689 abstracts were screened, 109 were selected for full-text review and 29 papers were included in the final analysis. Studies emphasized that parents and adolescent minors desire information about FP, and there was broad consensus that the views' of minors nearing adulthood should be more heavily weighted.1 However, there was a range in parent comfort with allowing minor participation in FP decision-making.2 Some authors highlighted the default stance that minors must assent to FP, while others argued that older adolescents may be able to fully consent.3 Some posit that if parents decline FP, the physician should persuade them to reconsider,4 while others proposed that parents should be able to decline, especially given the high cost.5 The ethical analysis weighs rights and interests including: minor's autonomy, minor's best interest, right to an open future, and parental autonomy. It concludes that when medically appropriate, FP is generally in a minor's best interest because it promotes future choice. Therefore, both parents and minors should be encouraged to pursue FP. If a younger minor refuses, whether FP is performed should depend on the minor's maturity, reason for refusing, and whether FP is likely to provide significant benefit. Older adolescents should be able to refuse out of respect for their autonomy. Special application of these recommendations is needed for transgender minors because of their unique concerns, including the possibility of FP inducing gender dysphoria.
CONCLUSION(S): This scoping review supports the conclusions that minors should be included in FP discussions and should have increasing decision- making authority as they near adulthood. When parents and minors disagree about FP, who should ultimately decide depends on the minor's age, maturity, whether the minor or parent declines FP, and whether FP is likely to provide significant benefit. IMPACT STATEMENT: This study offers a rigorous scoping review, ethical analysis and recommendations for navigating parent-child disagreement regarding FP in minors

OBJECTIVE: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. Additionally, health disparities exist among SGM AYAs and there is a gap in clinician training. The NCI-funded >=25 Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) provides reproductive health communication training to allied health professionals, including social workers, psychologists, nurses, and physicians assistants, who provide care for AYAs with cancer. The ECHO curriculum expanded to include the LGBT Oncofertility Education (LOvE) module. The module aims to improve knowledge on providing inclusive and affirming care, including collecting information about sexual orientation and gender identity, discussing reproductive health, and minimizing personal bias. The objective of this project is to evaluate the role of the module in improving reproductive health communication for the care of SGM AYAs with cancer. MATERIALS AND METHODS: Module participants completed a 10- item multiple-choice pretest and posttest assessing knowledge of providing affirming reproductive health care to SGM AYAs with cancer. Total knowledge scores ranged from 0 (no correct responses) to 10 (all correct responses). A post-module survey assessed relevance of the module, quality, and appropriateness to professional practice on a 5-point scale of strongly agree to strongly disagree. Six open-ended items invited respondents to describe integrating this knowledge into their practice, barriers for implementation, and suggestions for improving training in SGM AYA cancer care. Paired t-tests were used to analyze changes in knowledge before and after the module. Content analysis was applied to qualitative responses.
RESULT(S): Of the 37 respondents completing both the pretest and posttest (73% of pretest group), 8.1% correctly answered all pretest questions. This is compared to 59.5% who correctly answered all posttest questions. The average pretest score was 8.3; the average posttest score was 9.5 (DELTA=-1.2, t(36)=4.55, p<.0001). Eighty-nine percent of respondents strongly agreed that LOvE ECHO was relevant to their work and 95% strongly agreed that it was easy to understand and navigate. Open-ended responses focused on how the module helped respondents to strengthen the provider-patient relationship in the context of oncofertility, to create a safe space for patients, and to understand the relevance of educational materials about fertility to SGM patients.
CONCLUSION(S): Our findings demonstrate significant improvement in knowledge of inclusive and affirming care for SGM AYAs with cancer after completing the LOvE ECHO module. IMPACT STATEMENT: Improving provider knowledge may subsequently improve confidence in providing inclusive and affirming care for SGM AYA patients with cancer, resulting in improved whole person care

BACKGROUND:While breast cancer among women in general has been well studied, little is known about breast cancer in sexual minority women (SMW). Aside from being at an increased risk for development of, and mortality from, breast cancer compared to their heterosexual counterparts, there is a growing collection of literature that suggests that SMW experience breast cancer differently to heterosexual women. METHODS:Qualitative study of both straight and lesbian women with a diagnosis of breast cancer. Focus groups were conducted to assess straight and SMW experiences pertaining to perceived barriers, resources/support from partners as well as attitudes pertaining to breast reconstruction. RESULTS:A sample of 15 participants (10 straight and 5 lesbian women) were included in the present study. Focus group themes focused on support, wishes for support, satisfaction with inclusion of partner, fear, perceived discrimination, quality of life, body image, treatment delay, financial concern, frustration with the system, reconstruction, access to information, and attitudes towards cancer diagnosis. A majority of women in both groups chose to undergo breast reconstruction. CONCLUSION/CONCLUSIONS:In our study, SMW experienced their breast cancer treatment through a uniquely supportive and positive lens, often with higher relationship satisfaction and better self-image when compared to straight women.

Transgender, non-binary, and gender non-conforming people, also referred to as gender minorities, have unique cancer prevention, treatment, and care needs and experience cancer health disparities compared to the cisgender population. We present four composite cases of the cancer care challenges experienced by gender minorities.

BACKGROUND:Sexual health (SH) is an important concern for adolescents and young adults (AYAs). This study determined current SH communication practices, barriers, and additional resources needed among pediatric oncology clinicians who treat AYAs. METHODS:A cross-sectional survey was developed by the Children's Oncology Group (COG) AYA Committee and sent to pediatric oncologists (n = 1,987; 85.9%) and advanced practice providers (APPs, n = 326; 14.1%) at 226 COG institutions. Responses were tabulated and compared using tests of proportion and trend. RESULTS:The sample comprised 602 respondents from 168 institutions and was proportionally representative (468 oncologists [77.7%], 76 APPs [12.6%], 58 unidentified [9.6%]; institutional and provider response rates 74.3% and 26.2%, respectively). Almost half of respondents (41.7%) reported no/small role in SH care. Medical topics were discussed most often, including contraception (67.2%), puberty (43.5%), and sexual activity (37.5%). Topics never/rarely discussed included gender identity (64.5%), sexual orientation (53.7%), and sexual function (50.3%). Frequently cited communication barriers included lack of time, low priority, perceived patient discomfort, and the presence of a parent/guardian. Respondents endorsed the need for further education/resources on sexual function (66.1%), gender identity/sexual orientation (59.5%), and body image (46.6%). Preferred education modalities included dissemination of published guidelines (64.7%), skills training modules (62.9%), and webinars (45.3%). By provider type, responses were similar overall but differed for perception of role, barriers identified, and resources desired. CONCLUSIONS:Many pediatric oncology clinicians play minimal roles in SH care of AYAs and most SH topics are rarely discussed. Provider-directed education/training interventions have potential for improving SH care of AYA cancer patients.

BACKGROUND:Gender disparities exist in the careers of women in medicine. This review explores the qualitative literature to understand how gender influences professional trajectories, and identify opportunities for intervention. METHODS:A systematic review and thematic synthesis included articles obtained from PubMed, Cochrane Central Register of Controlled Trials (Ovid), EMBASE (Ovid), APA PsycInfo (Ovid), and GenderWatch (ProQuest) on June 26 2020, updated on September 10, 2020. Included studies explored specialty choice, leadership roles, practice setting, burnout, promotion, stigma, mentoring, and organizational culture. Studies taking place outside of the USA, using only quantitative data, conducted prior to 2000, or focused on other health professions were excluded. Data were extracted using a standardized extraction tool and assessed for rigor and quality using a 9-item appraisal tool. A three-step process for thematic synthesis was used to generate analytic themes and construct a conceptual model. The study is registered with PROSPERO (CRD42020199999). FINDINGS/RESULTS:Among 1524 studies identified, 64 were eligible for analysis. Five themes contributed to a conceptual model for the influence of gender on women's careers in medicine that resembles a developmental socio-ecological model. Gender influences career development externally through culture which valorizes masculine stereotypes and internally shapes women's integration of personal and professional values. CONCLUSION/CONCLUSIONS:Medical culture and structures are implicitly biased against women. Equitable environments in education, mentoring, hiring, promotion, compensation, and support for work-life integration are needed to address gender disparities in medicine. Explicit efforts to create inclusive institutional cultures and policies are essential to support a diverse workforce.

Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high (M = 5.74-6.33 out of 7), with no significant differences between non-attempter (n = 15) and attempter (n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.

Study question: Periodically, parents and children disagree about whether to pursue fertility preservation (FP). How should medical teams navigate these ethically complex situations? Summary answer: Several considerations must be weighed, including the minor's age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. What is known already: As reproductive technology advances, FP prior to gonadotoxic therapy has become the standard of care. Periodically, parents and children disagree about whether to pursue FP. To date, there is no clear guidance on how to navigate these difficult situations. Prior studies have demonstrated that adolescents undergoing gonadotoxic therapy want their views regarding FP to be taken into account, and also that most children and adolescents are comfortable with parental involvement in decision-making. However, transgender adolescents pursue FP at lower rates than adolescents with cancer, and more research is required to elucidate the unique needs and barriers of transgender youth. Study design, size, duration: This study involves a scoping review and ethical analysis about parent-child disagreement regarding FP in minors. The review analyzes papers that either demonstrate that parent-child disagreement occurs, describe the preferences of parents or children regarding decision-making around FP, or provide recommendations that can be used to resolve parent-child conflicts. The ethical analysis weighs relevant rights and interests, including the child's best interest, the right to an open future, the child's autonomy, and parental autonomy. Participants/materials, setting, methods: A search string was developed to identify all relevant published manuscripts on the topic of FP in minors, including studies on decision-making, family relations and ethical challenges. The search was run through several databases, abstracts were screened using Covidence, and data were extracted from full texts. Data abstracted from the review and existing literature on general medical decision-making for minors were used to construct an ethical framework for parent-child disagreements regarding FP in minors. Main results and the role of chance: Published work directly on the topic of parent-child disputes regarding FP is limited, however a number of studies tangentially discuss parent-child disagreements and provide insight into the desires of parents and children regarding decision-making around FP. Studies suggest that adolescents desire to have their views taken into account, and a minority of adolescents believe their wishes alone should be followed. The age of the minor is a crucial factor, and some propose that as adolescents approach adulthood, their autonomy should increase. At the same time, in practice, legal and financial constraints often render parents the ultimate decision-makers. Our ethical analysis weighs competing considerations, including the child's best interest, the right to an open future, the child's autonomy, and parental autonomy. It concludes that who prevails should depend on contextual factors, including the minor's age, the burden of the proposed procedure, and whether the minor or parent seeks to decline FP. There may also be special considerations for transgender adolescents, some of whom might have deeply personal reasons for pursuing or forgoing FP that are not well-understood by cisgender parents. Limitations, reasons for caution: The scoping review captured a variety of results, including survey and interview studies, society guidelines, and ethical analyses. As such, we were unable to define a uniform quality metric. However, we aimed to be more rather than less inclusive because of the limited results directly pertaining to parent-child disagreements. Wider implications of the findings: This study provides a robust review of decision-making for FP in minors and offers an ethical framework for weighing countervailing considerations when parents and children disagree about whether to pursue FP. The conclusions can be used to inform guidance for clinicians presented with this challenging ethical dilemma

PURPOSE/OBJECTIVE:Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts. METHODS:A prospective pilot study was conducted among families of males (12-25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts. RESULTS:=.59, p=.02) were associated with banking attempts. CONCLUSION/CONCLUSIONS:Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.