Leaving a Legacy: Allied Health Professionals' Perceptions of Fertility Preservation and Posthumous Reproduction for Adolescent and Young Adults with a Poor Cancer Prognosis.

Purpose: To explore Allied Health Professionals' (AHPs) experiences with and perceptions of posthumous assisted reproduction (PAR) among adolescent and young adults (AYA, ages 15-39) with a poor cancer prognosis. Methods: We conducted a qualitative analysis of video-based 90-minute focus groups (FGs) of AHPs who participated in the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) training program from May to August 2021. Moderator-facilitated discussions were guided by topics related to experiences around discussions and utilization of PAR among AYA with a poor cancer prognosis. Thematic analysis was conducted using the constant comparison method. Results: Forty-three AHPs participated in one of seven FGs. Three themes emerged: (1) PAR as palliative care: preserving patient's legacy for their partner, siblings, and parents; (2) ethical and legal considerations for balancing patient's time-sensitive needs; and (3) barriers AHPs encounter navigating complex dynamics of care in this population. Subthemes included an emphasis on patient autonomy, a multidisciplinary approach to counseling, early initiation of fertility discussions continuing over time, documenting reproductive desires, and concerns for family and offspring after patient death. Conclusions: AHPs desired timely conversations on reproductive legacy and family planning. In the absence of institutional policies, training, and resources, AHPs emphasized feeling ill-equipped to navigate the complex dynamics between patients, families, and colleagues. The development of transparent institutional policies, implementation of multidisciplinary care teams, and oversight with ethics committees may improve the provision of reproductive health care and/or end-of-life care for AYA with a poor cancer prognosis and their families.

Assessing Medical Students' Attitudes and Knowledge Regarding LGBTQ Health Needs Across the United States.

BACKGROUND: The lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community experiences health disparities. It is thus imperative that medical trainees receive training in the care of LGBTQ community. The objective of this study was to identify gaps in knowledge and comfort among medical school students in providing care for the LGBTQ community. METHODS: An online survey was administered to medical students at 3 institutions in the United States from December 2020 to March 2021. Using a Likert scale, the survey assessed attitudes, comfort, and knowledge in providing care for the LGBTQ community. The survey included questions for each specific LGBTQ population. Results were quantified using descriptive and stratified analyses, and an exploratory factor analysis was used to calculate attitude summary measure (ASM) scores. A total knowledge score was calculated, with higher values indicating greater knowledge. RESULTS: Among the 300 medical students who completed the survey, the majority were female (55.7%), White (54.7%), and heterosexual (64.3%). The majority of medical students felt comfortable (strongly agree/agree) participating in the care of lesbian (94.3%), gay (96.0%), and bisexual (96.3%) patients; this percentage dropped to 82.3% for non-binary and 71.3% for transgender patients. Only 27.0% of medical students reported confidence in their knowledge of health needs of transgender patients. LGBTQ self-identification, percent of core rotations completed in school, region of country, and friends and/or family who are part of the LGBTQ community were significantly associated with various ASM scores. Knowledge questions yielded high percentages of "neutral" responses, and medical students who identified as LGBTQ had significantly higher total knowledge scores. CONCLUSIONS: Overall, the surveyed medical students feel comfortable and willing to provide care for LGBTQ persons. But, there is limited knowledge about specific LGBTQ health needs. More education and training in the needs of transgender and non-binary patients, in particular, is indicated.

Evolution and growth of the ECHO (Enriching Communication skills for Health professionals in Oncofertility) program: a 5-year study in the training of oncofertility professionals.

PURPOSE: AYAs with cancer have unique psychosocial needs, with reproductive health being a primary concern. The ECHO training program provides reproductive health communication training to individuals providing care for AYAs with cancer. The purpose of this project is to describe the growth of ECHO and evaluate changes in learner engagement over a 5-year period. METHODS: ECHO is an 8-week online training program offered annually, with the program including learning modules, discussion topics and reflections, and synchronous discussions. Reflection quality scores and number of words were compared between the 5 cohorts using ANOVA with a p < .05 level of significance. Descriptive statistics summarized module topics, reflections, and synchronous discussions. RESULTS: The average number of reflections per unique learner increased each year (1.4 in cohort 1 vs 4.1 in cohort 5), as did average length and quality of reflections (72.1 words in cohort 1 vs 203.4 words in cohort 5, p < .0001; score of 1.21 in cohort 1 vs 4.46 in cohort 5, p < .0001). The percentage of learners in attendance at synchronous discussions increased between cohorts 4 and 5 (4.8% of learners in cohort 4 vs 18.8% of learners cohort 5). CONCLUSIONS: The ECHO program has seen significant growth and improvement in learner engagement over a 5-year period. This is particularly important given that student learning outcomes in online courses can be predicted by the level of engagement with online content. IMPLICATIONS FOR CANCER SURVIVORS: As fertility and reproductive health remain a top life goal and discussion priority for AYAs surviving cancer, increasing clinical competencies of AHPs in oncofertility is essential.

"No one size fits all" A Multi-Method Survey of Oncology Allied Health Professionals Experiences with Lesbian, Gay, Bisexual, Transgender/Queer Questioning Adolescent, and Young Adult Patients with Cancer and Reproductive and Sexual Health".

Objectives: To assess training needs for providers who care for adolescent and young adult (AYA) lesbian, gay, bisexual, transgender/queer questioning (LGBTQ) cancer patients, we conducted a mixed-method survey. During their cancer care experience, AYA cancer patients experience physical, psychosocial, and reproductive health challenges. In addition to these challenges, AYA LGBTQ individuals are a diverse and medically underserved population who experience unique challenges and disparities in medical care. Methods: Health care providers (n = 351) who participated in our reproductive health in cancer training program completed a survey with 28 quantitative items and 4 open-ended items assessing knowledge, confidence discussing reproductive health, and confidence in knowledge specific to reproductive needs and general health needs among AYA LGBTQ patients. Results: Confidence discussing and confidence in knowledge of reproductive and general health needs are lower regarding transgender and nonbinary patients. Nearly half of providers (45%) demonstrated low knowledge, while 38% and 17% demonstrated moderate and high knowledge, respectively. Open comments indicated providers desired more training around the needs of Trans and nonbinary patients, and creating welcoming environments. Conclusions: The majority of our participants demonstrate low or moderate knowledge regarding factors that can influence AYA LGBTQ patient care, suggesting that this is a key area for improvement. Furthermore, improving provider knowledge may subsequently improve confidence in general and reproductive needs of LGBTQ patients, resulting in improved patient-centered care. Improving provider knowledge and confidence may then ultimately help reduce disparities in cancer care among this patient population.

Perspectives surrounding fertility preservation and posthumous reproduction for adolescent and young adults with terminal cancer: Survey of allied health professionals.

BACKGROUND: While all reproductive-aged individuals with cancer should be offered fertility preservation (FP) counseling, there is little guidance over offers to adolescent and young adults (AYA) with terminal diagnoses, especially when considering posthumous assisted reproduction (PAR). The Enriching Communication skills for Health professionals in Oncofertility (ECHO/ENRICH) trains Allied Health Professionals (AHPs) to improve communication with AYAs with cancer. Little is known about AHPs' role in assisting in FP and PAR decisions. METHODS: This is a cross-sectional survey of ECHO/ENRICH trainees' attitudes and experience with FP and PAR in AYA with terminal cancer. RESULTS: The response rate was 61% (365/601). While 69% felt comfortable discussing FP with terminal AYA after ECHO/ENRICH training, 85% desired further education. The majority (88%) agreed FP should be an option for AYA with cancer, though some agreed offering FP provided false hope (16%) or was a waste of resources (7%). Most shared that avoidance of FP discussions was common practice, especially in the medically fragile, late-stage disease, or among minors. Many attributed lack of conversations to oncology team goals. Only 9% had prior experience with PAR. Many were conflicted about how PAR reproductive material should be gifted and who should be permitted to use PAR. Several raised moral concerns for PAR, or discomfort advising family. Many voiced desire for additional PAR-specific education. CONCLUSION: ECHO/ENRICH trainees had varied levels of exposure to FP in terminal AYA and limited experiences with PAR. Many expressed uncertainties with PAR, which may be alleviated with further training and transparent institutional policies.

For the LOvE of Reproductive Health Communication: Assessment of the LGBT Oncofertility Education (LOvE) Module.

Purpose: The lesbian, gay, bisexual, transgender, and queer (LGBTQ) Oncofertility Education (LOvE) module aims to improve knowledge on providing inclusive and affirming care for LGBTQ adolescents and young adults (AYAs) with cancer. The objective of this study is to evaluate the role of the module in improving reproductive health communication for the care of LGBTQ AYAs with cancer. Methods: A 10-item multiple-choice pre-test and post-test assessed learner knowledge, with total knowledge scores ranging from 0 (no correct responses) to 10 (all correct responses). A post-module survey and open-ended questions assessed relevance of the module, quality, and appropriateness to professional practice. Paired t-tests analyzed changes in knowledge before and after the module. Content analysis was applied to qualitative responses. Results: Thirty-seven learners completed both the pre-test and post-test. Around 8.1% correctly answered all pre-test questions; 59.5% correctly answered all posttest questions. The average pre-test score was 8.3, versus posttest score of 9.5 (p < 0.0001). Eighty-nine percent of learners strongly agreed that LOvE Enriching Communication Skills for Health Professionals in Oncofertility was relevant to their work; 95% strongly agreed that it was easy to understand and navigate. Open-ended responses highlighted how the module helped learners strengthen the provider-patient relationship in the context of oncofertility, create a safe space for patients, and understand the relevance of educational materials about fertility to LGBTQ patients. Conclusions: We found significant improvement in knowledge of reproductive health care for LGBTQ AYAs with cancer after completing the module. Improving provider knowledge may improve confidence in providing inclusive and affirming care for LGBTQ AYAs with cancer, resulting in improved whole-person care.

The LOvE ECHO Training: Developing a Web-Based LGBTQ Cultural Competency Training Module for Oncology Allied Health Professionals.

Purpose: This article describes the development of the LGBTQ Oncofertility Education (LOvE-ECHO). The Enriching Communication skills for Health professionals in Oncofertility (ECHO) team created this new education module in response to the needs of oncology allied health professionals to provide inclusive and affirming care to lesbian, gay, bisexual, transgender, and queer (LGBTQ) AYA patients with cancer. The new module is part of the ECHO, a web-based educational training program for oncology allied health professionals to improve communication with AYA about reproductive health. Methods: The development of LOvE-ECHO includes five phases-learner needs assessment, content development and revision, piloting, and finalizing. Results from a survey of past ECHO learners and a comprehensive literature review provided the basis of need for this module and identified the most prominent gaps in knowledge and training. Content development and revision were iterative, including input, feedback, and voices from LQBTA youth and survivors, researchers, reproductive health experts, oncology clinicians, and web developer. Results: The complete LOvE-ECHO module consists of both didactic and interactive lessons. A glossary of terms and narrated PowerPoint establishes a knowledge base and shared vocabulary. Three interactive cases and a plan for action provide learners opportunities to test their new knowledge and transfer it to their practice. Conclusion: The module has received positive feedback to date. It is currently being piloted with new learners who complete a pre-test and post-test, as well as a feedback survey. Analysis of these results will inform revisions to the module.

Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.

Background: Uptake of genetic testing for heritable conditions is increasingly common. In families with known autosomal dominant genetic cancer predisposition syndromes (CPS), testing youth may reduce uncertainty and provide guidance for future lifestyle, medical, and family building considerations. The goals of this systematic review were to examine: (1) how parents and their children, adolescents, and young adults (CAYAs) communicate and make decisions regarding testing for CPS and (2) how they communicate and make decisions about reproductive health/family building in the context of risk for CPS. Methods: Searches of MEDLINE/Pubmed, CINAHL, Web of Science, and PsycINFO yielded 4161 articles since January 1, 2000, which contained terms related to youth, pediatrics, decision-making, genetic cancer predispositions, communication, and family building. Results: Articles retained (N = 15) included five qualitative, six quantitative, and four mixed-method designs. Parents generally agreed testing results should be disclosed to CAYAs at risk or affected by genetic conditions in a developmentally appropriate manner. Older child age and child desire for information were associated with disclosure. Greater knowledge about risk prompted adolescents and young adults to consider the potential impact on future relationships and family building. Conclusions: Most parents believed it was their responsibility to inform their CAYAs about genetic testing results, particularly to optimize engagement in recommended preventative screening/lifestyle behaviors. Disclosing test results may be challenging due to concerns such as young age, developmental appropriateness, and emotional burden. Additional research is needed on how CPS risk affects CAYAs' decisions about reproductive health and family building over time.

Sexual health among adolescent and young adult cancer survivors: A scoping review from the Children's Oncology Group Adolescent and Young Adult Oncology Discipline Committee.

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.

Posthumous assisted reproduction policies among a cohort of United States' in vitro fertilization clinics.

OBJECTIVE: To assess the presence and content of policies toward posthumous assisted reproduction (PAR) using oocytes and embryos among Society for Assisted Reproductive Technology (SART) member clinics in the United States. DESIGN: Cross-sectional questionnaire-based study. SETTING: Not applicable. PATIENTS: A total of 62 SART member clinics. INTERVENTIONS: Questionnaire including multiple choice and open-ended questions. MAIN OUTCOME MEASURES: Descriptive statistics regarding presence and content of policies regarding PAR using oocytes and embryos, consent document content regarding oocyte and embryo disposition, and eligibility of minors and those with terminal illness for fertility preservation. RESULTS: Of the 332 clinics contacted, 62 responded (response rate 18.7%). Respondents were distributed across the United States, and average volume of in vitro fertilization (IVF) cycles per year ranged from <250 to >1,500, but 71.2% (n = 42) reported a volume of <500. Nearly one-half (42.4%, n = 25) of clinics surveyed reported participating in any cases of posthumous reproduction during the past 5 years, and 6.8% (n = 4) reported participation in >5 cases. Participation in cases of posthumous reproduction was not significantly associated with practice type or IVF cycle volume among those surveyed. Only 59.6% (n = 34) of clinics surveyed had written policies regarding PAR using oocytes or embryos, whereas 36.8% (n = 21) reported they did not have a policy. Practice type, IVF cycle volume, fertility preservation volume, and prior participation in cases of PAR were not significantly associated with the presence of a policy among respondent clinics. Of those with a policy, 55.9% (n = 19) reported they had used that policy, 59.1% (n = 13) without a policy reported they had considered adopting one, and 63.6% (n = 14) reported they had received a request for PAR services. Only 47.2% (n = 25) of clinics surveyed specified that patients not expected to survive to use oocytes due to terminal illness are eligible for oocyte cryopreservation, whereas 45.3% (n = 24) did not specify. CONCLUSIONS: Respondent clinics reported receiving an increasing number of requests for PAR services, but many also lacked PAR policies. Those with policies did not always follow ASRM recommendations. Given the low response rate, these data cannot be interpreted as representative of SART clinics overall. As PAR cases become more common, however, this study highlights poor reporting of PAR and institutional policies toward PAR, suggesting that SART clinics may not be equipped to systematically manage the complexities of PAR.

Uterus transplantation in women who are genetically XY.

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.

Health care provider perceptions of fertility preservation barriers and challenges with transgender patients and families: qualitative responses to an international survey.

PURPOSE: To examine provider perceptions of practice behaviors and barriers related to fertility counseling, fertility preservation, and family building among transgender patients. METHODS: Participants were medical and mental health professionals who treat adult and youth transgender patients. Recruitment occurred online and in person, via professional listservs for transgender professionals, conferences, and gender clinics. From August-November 2017, 110 participants representing nine countries responded to four open-ended questions included on a survey related to provider practice behaviors and perceived barriers to fertility counseling, fertility preservation, and family building with transgender patients. Thematic coding analysis was used to identify themes. RESULTS: Multiple themes were identified including the following: access and cost issues; urgency for gender-affirming treatment; patient maturity and inability to make future-oriented decisions; and provider-related challenges pertaining to knowledge, role, and general lack of information in the nascent field of transgender reproductive health. CONCLUSION(S): This study yielded insights into practice behaviors, challenges, and perceived barriers to fertility counseling with transgender individuals and can serve as a basis for intervention development to optimize clinical practices with this population.

Familial Discordance Regarding Fertility Preservation for a Transgender Teen: An Ethical Case Study.

A 16-year-old adolescent who identifies as transgender wishes to consider fertility preservation prior to the use of gender-affirming hormones. The adolescent's parents are divorced, and one parent supports fertility preservation while the other does not. This case explores the minor's future reproductive autonomy and parental decision making in a field where there is limited evidence of known harms and benefits to the use of fertility preservation in the transgender population and about future potential regret from lack of consideration of fertility preservation during the prime window of opportunity. This case is created from a composite of cases seen at multiple institutions.