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Testicular cancer in intersex individuals: A systematic review for clinical practice

Jones, Nat C; Madhavaram, Avanish; Haver, Mary Katherine; Quinn, Gwendolyn P
The objective of this systematic review was to identify the evidence of testicular cancer risk for people with intersex conditions. This assessment is hoped to help refine risk stratification tools for assessing gonadal malignancy risk and guide the development of more robust evidence-based management strategies. The literature was searched in Ovid MEDLINE, Embase, and Cumulative Index of Nursing and Allied Health using a search string developed by a multidisciplinary team. The protocol was registered at Prospective Register of Systematic Reviews as CRD42021231313. A total of 3608 articles were found. After selection, 301 publications were included (1215 individuals). The results identified significant evidence that pre-pubertal gonadectomy may be linked to lower rates of malignant gonadal changes for patients with partial gonadal dysgenesis, Turner's syndrome with Y-chromosome material, complete androgen insensitivity, partial androgen insensitivity, and patients with ovotestis/es. The evidence was not significant for patients with complete gonadal dysgenesis, Klinefelter syndrome, nor WT1-related syndromes. Specific cancer outcomes were unable to be assessed due to small sample sizes and thus it is unknown if clinically significant cancer outcomes are meaningfully altered by pre-pubertal gonadectomy. Importantly, the quality of data on the topic of gonadal malignancy in intersex patients with testicular tissue was determined to be poor overall. The quality was relatively more robust regarding the conditions of Complete Androgen Insensitivity, Klinefelter syndrome, and patients with ovotestis/es. More high-quality research is needed to draw specific conclusions on the risks and benefits of performing pre-pubertal gonadectomy for intersex patients. When counseling these patients, clinicians should be transparent regarding the paucity of data supporting pre-pubertal gonadectomy.
PMID: 41508675
ISSN: 1097-0215
CID: 5981272

Development and Pilot Evaluation of REFLECT: A Digital Health Application Supporting Fertility and Genetic Decision-Making in Adolescent and Young Adult Oncology

Desai, Sarita Pathak; Fuzzell, Lindsay; Lake, Paige W; Snir, Moran; Simmons, Emilie; Schmidlen, Tara; Metts, Jonathan; Quinn, Gwendolyn P; Vadaparampil, Susan T
PURPOSE/OBJECTIVE:(REFLECT), a digital health application designed to provide education and decision support related to fertility, genetic risk, and future family building for AYAs with cancer. This study developed and pilot-tested REFLECT to support informed decision-making. METHODS:REFLECT was developed using evidence-based content and implemented on a web-based platform integrating multimedia education and decision support. Two iterative rounds of user testing were conducted with AYA survivors (ages 18-39) using a Learner Verification framework to assess comprehension, usability, relevance, and acceptability. Participant feedback informed iterative refinements. RESULTS:= 16) reported that REFLECT was engaging, easy to navigate, and relevant to fertility, genetics, and future family-building concerns. Iterative testing identified opportunities to improve navigation, accessibility, and content organization, which were addressed through refinement. Participants reported increased confidence in discussing fertility preservation and genetic risk with providers and emphasized the value of an integrated patient-centered tool, particularly at the time of diagnosis. CONCLUSION/CONCLUSIONS:This pilot demonstrates that REFLECT is feasible, acceptable, and usable among AYAs. By integrating fertility and genetic risk education with decision support in an accessible digital format, REFLECT addresses a critical gap in AYA oncology care. These findings support further evaluation in clinical settings.
PMID: 42025577
ISSN: 2156-535x
CID: 6033052

Dreaming Big: Providing American Society of Clinical Oncology Guideline Concordant Oncofertility Care for Adolescents and Young Adults

Desai, Sarita Pathak; Rice, Whitney S; Lake, Paige; Walker, Elizabeth Reisinger; Barnett, Marie; Augusto, Bianca; Quinn, Gwendolyn P; Vadaparampil, Susan T
PURPOSE/OBJECTIVE:Fertility preservation (FP) is essential for adolescents and young adults (AYAs) with cancer aged 15-39, yet gaps persist in guideline-concordant care. Despite American Society of Clinical Oncology (ASCO)'s 2018 recommendations, clinician and systemic barriers hinder timely FP counseling. Allied health care professionals (AHPs) play a critical role in supporting patient education and support. This study examined AHPs' conceptualizations of optimal FP care, assessed alignment with ASCO guidelines, and identified facilitators and barriers to implementation. METHODS:This study analyzed data from Cohort 4 (2020) of the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) program, an 8-week web-based training for AHPs on AYA reproductive health communication. A directed content analysis was used to qualitatively examine factors influencing FP care delivery. Multilevel themes were analyzed to identify potential mechanisms to facilitate optimal FP care, resources needed for implementation, and barriers to FP patient education. RESULTS:Among 130 AHPs (92% female, 72% White), most were social workers (29%) or oncology nurses (25%), working in academic cancer centers (49%). Alignment with ASCO guidelines was observed in fertility risk discussions (72%) and specialist referrals (56%). Key facilitators included patient education (46%), clinician training (48%), and interdisciplinary collaboration (47%). Primary barriers identified were systemic challenges (20%), including financial constraints, limited institutional resources, and time pressures. CONCLUSION/CONCLUSIONS:AHPs demonstrated strong commitment to advancing FP care for AYAs with some alignment to ASCO guidelines. Persistent gaps in psychosocial support and system-level resources highlight the need for expanded clinician education, stronger interdisciplinary networks, and institutional prioritization to ensure equitable, developmentally appropriate FP care.
PMID: 41951548
ISSN: 2156-535x
CID: 6025512

Embodiment and Belonging: The Need for Gender-Inclusive Approaches to Abortion Ethics [Comment]

Unger, Katherine Grace; Holmes, Elizabeth; Quinn, Gwendolyn
PMID: 41950040
ISSN: 1536-0075
CID: 6025452

The Development and Refinement of a Web-Based Sexual Health Education Intervention for Pediatric Oncology Physicians and Advanced Practice Providers Caring for Adolescents and Young Adults With Cancer

Frederick, Natasha N; Bennett, Alyssa; Bingen, Kristin; Cherven, Brooke; Chevalier, Lydia L; Demedis, Jenna; Freyer, David R; Nguyen, Adrienne; Nowobilski, Mary-Kate; Pitter, Trisha; Quinn, Gwendolyn P; Bober, Sharon L
PURPOSE/OBJECTIVE:Adolescent and young adult (AYA) oncology patients demonstrate an expressed need for improved sexual health (SH) communication with oncology clinicians, yet these conversations rarely take place, with clinicians identifying lack of education as a key barrier. This work describes the development and revision of a suite of educational modules aiming to improve clinician SH communication. METHODS:Literature review, data collected from prior research by the study team, and expert input from the Children's Oncology Group AYA Sexual Health Task Force were used to develop a series of interactive, online education modules. Clinicians, including physicians and advanced practice providers, were recruited by email across five academic institutions to review the modules and provide feedback through completion of an online open-ended survey. Themes derived from feedback guided module modifications. RESULTS:The initial curriculum consisted of three interactive modules that focused on the importance of addressing SH with AYA patients, how to discuss SH with AYAs, and contraception/safe sex practices during cancer treatment. Fourteen pediatric oncology clinicians reviewed the modules and provided feedback. Collectively, participants described the modules as informative, well-organized, visually appealing, and relevant to clinical practice. Opportunities for improvement included an option to modify the speed of narration, the incorporation of more interactive features to facilitate learner engagement, and the need for additional content on sexual dysfunction. CONCLUSION/CONCLUSIONS:This suite of clinician-focused SH education modules represents a key step in advancing AYA SH care throughout cancer treatment and survivorship. Future work will explore the efficacy of the modules on AYA-clinician SH communication.
PMID: 41834222
ISSN: 1545-5017
CID: 6016402

Beyond Paternalism: Rethinking Teratogen and Fertility Counseling Education from a Learner Perspective

Frucht, Lucy; Kakkad, Nikita; Keller, Samantha; Quinn, Gwendolyn P
Medical education plays a crucial role in shaping how future physicians understand and approach the prescribing of teratogenic medications to individuals with the capacity for pregnancy. The teaching that we, as medical students, experienced on this topic relied on blanket cautions derived from current guidelines that either warn students to never prescribe teratogenic medications for "women of childbearing age" or to adhere to rigid contraceptive mandates that lack guidance on contraceptive counseling, reproductive goals, or individual risk. This educational approach erases patient diversity and undermines the principles of reproductive justice. As students who are invested in reproductive health both from an educational and personal standpoint, and with our clinical education taking place in an institution and geographic and political context supportive of comprehensive reproductive health, we felt a better approach was possible. We have witnessed thoughtful, nuanced conversations between patients and providers surrounding the friction between patients' fertility goals and treatment options for other medical conditions. We outline three anecdotes that exemplify the discordance between the limited preclinical instruction most of our classmates receive and the clinical practices we have observed that foreground reproductive justice, inclusivity, and patient-provider trust. Moreover, there is a lack of empiric evidence regarding medical students' knowledge and capacity to conduct teratogenic medication counseling. Existing literature reveals a fragmented and simplified approach taken by many clinicians in prescribing these drugs. These shortcomings are related to those that exist in the context of our personal education, and it is likely that medical education on the topic of teratogenicity, contraception, and fertility is institution dependent. Given that best practices and instructions for approaching these counseling situations are not yet formalized, it is reasonable to assume that students are likely graduating from medical school with varied levels of confidence, skill, and training in this area. We find it necessary that reproductive counseling and contraceptive care for patients on teratogenic medications is taught comprehensively to students to reflect our responsibility as physicians to respect individual reproductive goals, provide inclusive and affirming care, and build trust. The individual tension we have identified within our educational experience sheds light on an area of instruction that may hold significant potential in shaping a generation of thoughtful, effective physicians.
PMID: 41834460
ISSN: 1532-8015
CID: 6016412

Platelet Hyperreactivity and Risk of Ischemic Placental Disease: A Prospective Cohort Study

Penfield, C A; Robinson, A; Schaap, A; Luttrell-Williams, E; Hausvater, A; Xia, Y; Muller, M; House, M S; Avtushka, V; Murphy, L; Zhou, C; Brandt, J S; Quinn, G P; Roman, A S; Gossett, D R; Berger, J S
INTRODUCTION/UNASSIGNED:Platelet hyperreactivity is linked to inflammation and cardiovascular risk in nonpregnant populations, but its relationship to placentally mediated pregnancy outcomes is undefined. We prospectively evaluated platelet hyperreactivity in pregnancy and subsequent ischemic placental disease (IPD), and examined aspirin's (ASA) effect on platelet activity by baseline platelet phenotype. METHODS/UNASSIGNED: RESULTS/UNASSIGNED:Of 66 pregnant participants recruited, 61 had first-trimester LTA; 20 (32.8%) had platelet hyperreactivity. Participants with hyperreactivity were more likely to develop IPD than those without (55% versus 24%, adjusted odds ratio [aOR] 3.77 (95% CI [1.05-13.53]), with consistent directionality across individual components despite low event frequencies. Participants with platelet hyperreactivity showed greater platelet aggregation to ADP, collagen, and low-dose AA. Platelet transcriptomic profiling distinguished participants with versus without platelet hyperreactivity and revealed differential expression of pathways related to platelet activity, energy metabolism, and immune regulation. Among 45 high-risk participants recommended ASA, those with hyperreactivity exhibited higher AA-induced aggregation (24% vs 12.5% platelet aggregation, p=0.01) despite similar serum TxB2 levels. CONCLUSION/UNASSIGNED:First-trimester platelet hyperreactivity was present in approximately one-third of participants and was independently associated with increased risk of IPD. Participants with platelet hyperreactivity demonstrated distinct transcriptomic signatures and greater platelet aggregation despite ASA use. Together, these findings support a contributory role for platelets in placental ischemic pathology and highlight the need to elucidate mechanisms and develop platelet-targeted preventive strategies.
PMCID:13186447
PMID: 42165029
ISSN: 2997-9684
CID: 6038452

Medical Mistrust and the Patient Experience: A National Survey on What Shapes Engagement in OB/GYN Care

Bellon, Margot; Kakkad, Nikita; Schneider, Jake; Friedman, Steven; Jalili, Dona; Quinn, Gwendolyn P
OBJECTIVES/OBJECTIVE:To examine how media, geography, race, and social factors shaped patient experiences to inform strategies for improving trust and care. DESIGN/METHODS:We conducted a cross-sectional online survey of experiences and perceptions of OB/GYN care and medical mistrust using a stratified, randomised sampling approach. SETTING/METHODS:The survey was distributed through Prolific. POPULATION/METHODS:Inclusion criteria included assigned female at birth, age between 18 and 40 years, and residing in the United States. MAIN OUTCOME MEASURES/METHODS:Gender preference of OB/GYN clinician, demographic association with negative OB/GYN experiences, and degree of medical mistrust. RESULTS:Of 579 respondents, 93% identified as women, 33.9% as LGBTQIA+, and 45.2% had a history of pregnancy. Anxiety was the most common (46.4%) emotion experienced when receiving OB/GYN care, and 25.8% reported negative experiences, primarily from minimization of concerns (68.5%). A majority (65.3%) preferred receiving care from a female OB/GYN. Identifying as Republican was associated with higher odds of having had a negative experience with an OB/GYN, whereas Asian race and lower education were linked to lower odds. Black, Asian, and multiracial participants were more likely to have a racial preference for clinicians. Medical mistrust was higher among Black respondents and those with lower education. Feeling heard by a clinician was the strongest predictor of care satisfaction. CONCLUSION/CONCLUSIONS:Anxiety and negative experiences were prevalent among participants. Feeling heard was the strongest predictor of patient satisfaction, highlighting the importance of patient-centred OB/GYN care to reduce mistrust and improve patient experiences, particularly for marginalised groups.
PMID: 41667132
ISSN: 1471-0528
CID: 6002042

Ethical Controversies in the Adriana Smith Case in Georgia: Brain Death/Death by Neurologic Criteria in Pregnancy [Case Report]

Lewis, Ariane; Quinn, Gwendolyn; Mutcherson, Kimberly
This manuscript explores the myriad ethical controversies associated with declaration of brain death/death by neurologic criteria (BD/DNC) during pregnancy raised by the case of Ms. Adriana Smith, a 30-year-old Georgia nurse, who came to international attention in May 2025. We will discuss: (1) the factors that may have impacted the decision not to perform neuroimaging when she first presented to medical attention; (2) the significance of identifying and deferring performance of futile interventions to decrease intracranial pressure relative to BD/DNC declaration; (3) the medical, ethical and legal complexities associated with BD/DNC declaration and continuation of maternal organ support in pregnancy; (4) the impact of continuing maternal organ support after BD/DNC declaration on the fetus, the family, Ms. Smith and the treatment team; and (5) the effects of media coverage of this case. This case's influence on future BD/DNC declarations during pregnancy, both in Georgia and elsewhere, remains to be seen.
PMID: 40928476
ISSN: 1536-0075
CID: 5985732

Evaluating the National Academy of Science Engineering and Medicine's recommended sexual orientation and gender identity questions: community perceptions

Bellon, Margot; Trifonov, Alexandr; Kunamneni, Sruthi; Jalili, Dona; Moore, Kevin; Haseltine, Megan; Nelson, Rachel; Stasenko, Marina; Scout, N F N; Domogauer, Jason; Quinn, Gwendolyn P
PURPOSE/OBJECTIVE:The National Academy of Science Engineering and Medicine (NASEM) developed items to collect sexual orientation and gender identity (SOGI) in healthcare settings to harmonize collection of these data and address disparities often experienced by sexual and gender minorities (SGM) (LGBTQAI+). This study tested wording of SOGI items among the SGM Community. METHODS:Individuals were recruited to participate in an interview about the NASEM SOGI items. Eligible participants identified as SGM, lived within the catchment area of an NYC academic medical center, had a history of cancer, or were caregivers of a person with cancer. Interviews were audio-recorded, transcribed, and qualitatively coded. RESULTS:Thirty-eight SGM individuals participated. The majority disliked the options for sexual orientation (SO) and gender identity (GI) but did find one they would choose. For SO, participants thought options like queer, pansexual, and asexual were missing, and for GI, participants said non-binary and transgender category (transgender man, transgender woman) were needed. Half said they had no concerns about disclosing SOGI information on medical intake forms and others reported preferring knowing why it was needed and who would have access. Several expressed worry about their safety upon disclosure of SOGI. Respondents cited being less likely to disclose SOGI if there was an offensive question on intake form (e.g., spouse instead of partner) or if there were no privacy assurances. Almost all expected reported SOGI to be reflected in their oncology healthcare. CONCLUSIONS:The NASEM questions need improvement. To improve trust and encourage disclosure, clinicians and clinics should improve the options for SOGI data collection and take steps to ensure privacy is addressed.
PMID: 41345789
ISSN: 1433-7339
CID: 5975192