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Fertility Preservation Discussions And Decisions: Results From a Pilot Randomized Controlled Trial Among Adolescent Males With Cancer

Nahata, Leena; Roche, Charleen I; Griffith, Megan M; Karkare, Tanvi; Quinn, Gwendolyn P; O'Brien, Sarah H; Boone, Kelly; Audino, Anthony; Yeager, Nicholas; Whiteside, Stacy; English, Jennifer; Klosky, James L; Rausch, Joseph R; Gerhardt, Cynthia A
BACKGROUND/OBJECTIVES/OBJECTIVE:The Family-centered Adolescent Sperm banking values clarification Tool (FAST) was developed to facilitate sperm banking communication and decision-making pre-cancer treatment. The FAST was tested in a pilot parallel randomized controlled trial (Fertility Preservation Discussions And Decisions: "FP-DAD"-NCT04268004), aiming to (i) assess feasibility/acceptability of FP-DAD; and (ii) examine efficacy regarding banking attempts (yes/no) and decision quality. Differences in decision quality by banking attempt were explored. DESIGN/METHODS/METHODS:Males (12-25 years, new cancer diagnosis) and caregivers were randomized to standard of care (fertility consult) or FP-DAD (fertility consult + FAST + interventionist-led discussion). One month later, FP-DAD participants completed acceptability surveys. Both arms completed the Brief Subjective Decision Quality measure. Descriptive statistics, chi-square, and independent samples t-tests/mixed-models examined relationships between variables. RESULTS:Acceptability ratings of FP-DAD were high (88%-100%). Recruitment and participation challenges limited the final sample size (21 adolescents and 32 caregivers). Banking attempts (67% in standard of care vs. 82% in FP-DAD) did not differ by arm. While decision quality was not significantly different between groups, effect sizes were medium-large for four of six items for adolescents (d = 0.6 to -0.90) and two of six for caregivers (d = 0.36 to -0.78). Decision quality was significantly higher across several domains among those who banked. CONCLUSIONS:FP-DAD had high acceptability, though feasibility challenges (e.g., time contraints) limited full family participation. Findings showed limited efficacy, but effect sizes suggest this may be due to sample size. Relationships between banking attempts and decision quality emphasize banking benefits. Findings will inform adaptations to the FAST for clinical implementation.
PMID: 40372254
ISSN: 1545-5017
CID: 5844572

Barriers and facilitators in access to reproductive health services for sexual and gender minority populations in the United States: A focus group study

Avshman, Elaine G; Jalili, Dona; Penfield, Christina; Domogauer, Jason; Shaw, Jacquelyn; Lilly, Anna-Grace; Zayyad, Shadin; Sampson, Amani; Margolies, Katie; Quinn, Gwendolyn P
OBJECTIVE:This study aimed to identify facilitators and barriers among sexual and gender minority (SGM) individuals in receiving reproductive healthcare. METHODS:Participants were recruited through social media and university groups across the US. Inclusion criteria consisted of self-identified SGM community members; aged 18-40. This included: cisgender women whose sexual orientation included gay, lesbian, bisexual, and/or queer and / or individuals whose gender identity does not align with their sex assigned at birth; transgender men, non-binary people with a uterus, cisgender queen woman, and transgender woman. An initial codebook was developed utilizing inductive coding to identify key themes. RESULTS:A total of 9 focus groups were held with 67 people,5-10 people per group. Six themes were identified: 1) Barriers to high quality reproductive care, 2) Facilitators to high quality reproductive care, 3) Negative prior experiences, 4) Physical/logistical access to adequate care, 5) Emotions/trust in disclosing SGM status, and 6) Knowledge levels on SGM reproductive healthcare. CONCLUSION/CONCLUSIONS:Quality reproductive health care for SGM individuals is hindered by individual, clinician, and institutional factors. The factors include individual barriers of knowledge, distrust, and dysphoria; clinician barriers knowledge gaps or discomfort; and institutional factors of false advertising of LGBTQ+ friendly practices. PRACTICE IMPLICATIONS/CONCLUSIONS:This study impacts clinical practice through providing focused areas to better improve training and education for healthcare providers. Findings support improving clinical training on cultural humility, creating a welcoming environment, maintaining trust, and utilizing sensitive terminology.
PMID: 40339511
ISSN: 1873-5134
CID: 5839412

Evaluation of a Multi-Site Cancer Health Disparities Research Training Program for Underrepresented Undergraduate and Medical Students

Cousin, Lakeshia; Peoples, Z'Kera; Suppiah, Vivekka; Li, Jiannong; Quinn, Gwendolyn P; Martinez, Ursula; Zea, Arnold H; Meade, Cathy D; Gwede, Clement K; Tsien, Fern; Zabaleta, Jovanny; Reich, Richie; Simmons, Vani N
Diversifying the biomedical research workforce is crucial for eliminating cancer health disparities. To address this need, Moffitt Cancer Center and Louisiana State University Health Sciences formed the Southeast Partnership for Improving Research and Training in Cancer Health Disparities (SPIRIT-CHD). A key component of SPIRIT-CHD is the Cancer Research Education Program (CREP), designed to train underrepresented undergraduate and medical students in biomedical science research. The CREP featured an 8-week summer internship with a web-based curriculum, community outreach, and mentored research experiences. Three cohorts (n = 39) completed the CREP. Students were evaluated before and after the internship using the Goal Attainment Scale (GAS), Science Teaching Efficacy Belief Instrument (STEBI), and Research Appraisal Inventory (RAI), modified to assess CREP outcomes. These scales measured students' intentions to pursue cancer research careers, self-efficacy in communicating scientific information, and perceived research abilities. Paired test results showed significant increases (p < 0.001) in scores across the scales (GAS, STEBI, RAI) pre- and post-training. Trainees reported heightened intentions to pursue cancer research careers (GAS; mean increase of 5.3, p < 0.001) and greater self-efficacy in relaying scientific information (STEBI; mean increase of 9.2, p < 0.001). They also showed increased self-confidence in conducting research (RAI; mean increase of 58.2, p < 0.001). These findings demonstrate the program's success in fostering interest in cancer research careers and enhancing research confidence. Results support the development of programs like CREP to positively impact the academic and professional trajectories of underrepresented students, ultimately creating a more diverse and inclusive biomedical research workforce equipped to address health disparities.
PMID: 39167358
ISSN: 1543-0154
CID: 5680742

Filling in the gaps on outcomes of ovarian tissue cryopreservation in girls with Turner syndrome [Editorial]

Elliott, Victoria A; Nahata, Leena; Quinn, Gwendolyn P
PMID: 39880151
ISSN: 1556-5653
CID: 5781002

Fertility Preservation in People With Cancer: ASCO Guideline Update

Su, H Irene; Lacchetti, Christina; Letourneau, Joseph; Partridge, Ann H; Qamar, Rubina; Quinn, Gwendolyn P; Reinecke, Joyce; Smith, James F; Tesch, Megan; Wallace, W Hamish; Wang, Erica T; Loren, Alison W
PURPOSE/OBJECTIVE:To provide updated fertility preservation (FP) recommendations for people with cancer. METHODS:A multidisciplinary Expert Panel convened and updated the systematic review. RESULTS:One hundred sixty-six studies comprise the evidence base. RECOMMENDATIONS/CONCLUSIONS:People with cancer should be evaluated for and counseled about reproductive risks at diagnosis and during survivorship. Patients interested in or uncertain about FP should be referred to reproductive specialists. FP approaches should be discussed before cancer-directed therapy. Sperm cryopreservation should be offered to males before cancer-directed treatment, with testicular sperm extraction if unable to provide semen samples. Testicular tissue cryopreservation in prepubertal males is experimental and should be offered only in a clinical trial. Males should be advised of potentially higher genetic damage risks in sperm collected soon after cancer-directed therapy initiation and completion. For females, established FP methods should be offered, including embryo, oocyte, and ovarian tissue cryopreservation (OTC), ovarian transposition, and conservative gynecologic surgery. In vitro maturation of oocytes may be offered as an emerging method. Post-treatment FP may be offered to people who did not undergo pretreatment FP or cryopreserve enough oocytes or embryos. Gonadotropin-releasing hormone agonist (GnRHa) should not be used in place of established FP methods but may be offered as an adjunct to females with breast cancer. For patients with oncologic emergencies requiring urgent oncologic therapy, GnRHa may be offered for menstrual suppression. Established FP methods in children who have begun puberty should be offered with patient assent and parent/guardian consent. The only established method for prepubertal females is OTC. Oncology teams should ensure prompt access to a multidisciplinary FP team. Clinicians should advocate for comprehensive FP services coverage and help patients access benefits.Additional information is available at www.asco.org/survivorship-guidelines.
PMID: 40106739
ISSN: 1527-7755
CID: 5813392

Wanted, but Elusive: Clear Solutions for Addressing Potential Group Harm in Data-Centric Research [Comment]

Chapman, Carolyn Riley; Dwyer, Patrick; Owens, Kellie; Berrios, Courtney; Natri, Heini M; Caplan, Arthur L; Quinn, Gwendolyn P
PMID: 40067136
ISSN: 1536-0075
CID: 5808312

The relationship between platelet indices and hypertensive disorders of pregnancy

Griffin, Myah M; Penfield, Christina A; Hausvater, Anaïs; Schaap, Ariel; Roman, Ashley S; Xia, Yuhe; Gossett, Dana R; Quinn, Gwendolyn P; Berger, Jeffrey S
OBJECTIVE:To investigate the relationship between platelet indices (count, size and production/immaturity) and hypertensive disorders of pregnancy. STUDY DESIGN/METHODS:This was a secondary analysis of a prospective cohort of pregnant individuals followed from first trimester through delivery at an academic tertiary care institution. Routine platelet indices obtained prospectively during prenatal care and delivery were compared between those who developed a hypertensive disorder of pregnancy and those who did not. We assessed platelet count (by trimester), mean platelet volume, and immature platelet fraction measured as percent (%) and absolute count. Data were analyzed using Fisher's Exact test, chi-square test, and multivariable logistic regression. P < 0.05 was considered statistically significant. RESULTS: = 0.01) compared to those without a hypertensive disorder of pregnancy, after adjusting for age, race/ethnicity, obesity, nulliparity, and chronic hypertension. The prevalence and likelihood of a hypertensive disorder of pregnancy increased with increasing mean platelet volume, as well as with both the percent and absolute immature platelet fraction. There was no difference between groups in platelet count in the first trimester, second trimester, or at delivery. CONCLUSIONS:An increase in platelet size and immaturity was observed in those with a hypertensive disorder of pregnancy. These data support further investigation of platelets in the mechanisms of the development of hypertensive disorders of pregnancy and the use of platelet indices to better identify high risk groups in pregnancy.
PMID: 40086260
ISSN: 1872-7654
CID: 5808932

Clinical, Psychosocial, and Ethical Consideration in Assisted Reproductive Technology in Lesbian, Gay, Bisexual, Transgender and Queer+ Populations

Weidenbaum, Emily; Quinn, Gwendolyn P; Rider, G Nic
When evaluating reproductive care for lesbian, gay, bisexual, transgender, and queer+ patients, there are multiple factors that must be addressed from a clinician, clinic, and social standpoint. Clinicians should be trained in culturally humble and trauma-informed care; clinics should have intake forms that identify sexual orientation, gender identity, and pronouns. The clinic environment should be inclusive, with all gender or single-stall bathrooms, and patient-facing educational materials that are representative of individuals with diverse partnerships, races, and ethnicities. In order to provide genuine culturally humble care, clinicians must be adequately trained and clinics must be appropriately prepared.
PMID: 39880569
ISSN: 1558-0474
CID: 5781032

Difference-Makers for Collecting Sexual Orientation and Gender Identity Data in Oncology Settings

Pratt-Chapman, Mandi L; Miech, Edward J; Mullins, Megan A; Chang, Shine; Quinn, Gwendolyn P; Maingi, Shail; Schabath, Matthew B; Kamen, Charles
PURPOSE/OBJECTIVE:The purpose of this analysis was to identify key difference-making conditions that distinguish oncology institutions that collect sexual orientation and gender identity (SOGI) data across a sample of American Society of Clinical Oncology (ASCO) members. METHODS:From October to November 2020, an anonymous 54-item web-based survey was distributed to ASCO members. Coincidence analysis was used to identify difference-making conditions for the collection of SOGI data. RESULTS:ASCO members' responses to just three items consistently distinguished practices that reported collecting both SO and GI data (n = 25) from those who did not (n = 20): (1)."Do you ask your patients what pronouns they want you to use for them?"; (2) "Institutional leadership supports collecting SOGI data from patients"; and (3)"Does the electronic health record (EHR) at your institution have a specific section to collect information about patients' SOGI?" The positive model exhibited both reliability (consistency = 0.87, or 20/23) and explanatory breadth (coverage = 0.80, or 20/25). The negative model for SOGI data collection consisted of different responses to the same three items and likewise showed both reliability (consistency = 0.94, or 16/17) and explanatory breadth (coverage = 0.80, or 16/20). CONCLUSIONS:Specific levels of leadership support, frequency of asking patients about pronouns, and the presence or absence of EHR record structure were difference-makers for collecting SOGI data in this sample. The study underscores the importance of leadership support, structured data fields, and attention to patient pronouns, which are aligned with the ASCO and National Institutes of Health calls to action.
PMCID:11883291
PMID: 40047060
ISSN: 2045-7634
CID: 5809822

Fertility preservation options at cancer diagnosis; classifying use and decision-making in the United States

Pathak, Sarita; Voigt, Paxton; Bellon, Margot; Vadaparampil, Susan T; Quinn, Gwendolyn P
INTRODUCTION/UNASSIGNED:Incidence rates for cancer among adolescent and young adults (AYA) have increased 30% since 1970. Declines in mortality underscore the importance of discussing fertility preservation (FP) options prior to receiving gonadotoxic treatments. National guidelines outline FP options including oocyte (OC), embryo (EC), and ovarian tissue cryopreservation (OTC) for female AYA patients. Significant progress has led to changes in FP practices, initially limited to EC. Subsequently, OC was deemed non-experimental in 2013, followed by OTC in 2020. Despite these advancements and guideline recommendations, the availability and utilization of FP services vary. AREAS COVERED/UNASSIGNED:Rapid review methodologies were employed to classify trends in female AYAs utilization of FP cryopreservation options following guideline updates. FP options reviewed include OC, EC, and OTC. Additionally, the review examined if aspects of the decision-making process relevant to FP were present. EXPERT OPINION/UNASSIGNED:Ten articles met inclusion criteria. Results suggest that the declassification of OTC has not necessarily increased its use and OC and EC appear to be most frequently used. The factors associated with decision making appear to have remained consistent with financial constraints having the most impact, followed by partner status and concerns about recurrence.
PMID: 39745450
ISSN: 1744-8417
CID: 5781862