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Fertility Preservation Practices at Pediatric Oncology Institutions in the United States: A Report From the Children's Oncology Group

Frederick, Natasha N; Klosky, James L; Meacham, Lillian; Quinn, Gwendolyn P; Kelvin, Joanne F; Cherven, Brooke; Freyer, David R; Dvorak, Christopher C; Brackett, Julienne; Ahmed-Winston, Sameeya; Bryson, Elyse; Su, H Irene; Chow, Eric J; Levine, Jennifer
PURPOSE/UNASSIGNED:Fertility discussions are an integral part of comprehensive care for pediatric, adolescent, and young adult patients newly diagnosed with cancer and are supported by national guidelines. Current institutional practices are poorly understood. METHODS/UNASSIGNED:A cross-sectional survey was distributed to 220 Children's Oncology Group member institutions regarding fertility discussion practices. Descriptive statistics were calculated for all variables. The association between specific practices and selected outcomes on the basis of sex was examined via multivariable logistic regression. RESULTS/UNASSIGNED:< .001). Program characteristics associated with fertility discussions included reproductive endocrinology and infertility on site (females odds ratio [OR], 2.1; 95% CI, 1.0 to 4.3), discussion documentation mandate (females OR, 2.3; 95% CI, 1.0 to 5.5; males OR, 3.5; 95% CI, 1.4 to 8.7), and cumulative institution-based FP infrastructure (which included [1] routine practice of documentation, [2] template for documentation, [3] mandate for documentation, and [4] availability of FP navigation; females OR, 1.6; 95% CI, 1.1 to 2.3; males OR, 2.3; 95% CI, 1.6 to 3.4). Utilization of practices unsupported by guidelines included offering sperm banking after treatment initiation (39/135 programs; 28.9%), gonadotropin-releasing hormone analogs for ovarian suppression/FP (75/144 programs; 52.1%), ovarian tissue cryopreservation at diagnosis for patients with leukemia (19/64 programs; 29.7%), and testicular tissue cryopreservation (23/138 programs; 16.7%) not part of a clinical trial. CONCLUSION/UNASSIGNED:Despite recommended guidelines, fertility discussions with patients/families before treatment initiation are not routine at Children's Oncology Group institutions. Standard criteria to determine which options should be offered to patients are more common for males than females.
PMCID:10113112
PMID: 36763922
ISSN: 2688-1535
CID: 5462202

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

Barrett, Francesca; Sutter, Megan E; Campo-Engelstein, Lisa; Sampson, Amani; Caplan, Arthur; Lawrence, Morgan; Vadaparampil, Susan T; Quinn, Gwendolyn P
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/CONCLUSIONS: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.
PMID: 36226382
ISSN: 2045-7634
CID: 5361032

Behavioral beliefs about genetic counseling among high-risk Latina breast cancer survivors in Florida and Puerto Rico

Rivera Rivera, Jessica N; Conley, Claire C; Castro-Figueroa, Eida M; Moreno, Laura; Dutil, Julie; García, Jennifer D; Ricker, Charité; Quinn, Gwendolyn P; Soliman, Hatem; Vadaparampil, Susan T
Compared with non-Hispanic White women, Latina women are less likely to receive genetic counseling (GC) and testing (GT) following BC diagnosis. This study used secondary data analysis to explore beliefs about GC among Latina BC survivors in and outside the US mainland. GC/GT-naïve, high-risk, Spanish-preferring Latina BC survivors (n = 52) in FL and PR completed the Behavioral Beliefs about GC scale. Participants reported high positive beliefs about GC (M = 4.19, SD = 0.92); the majority agreed that GC was beneficial to understand cancer risk (90%) and promote discussion (87%) in their family. Participants reported low-to-moderate scores for barriers (Ms = 1.53-3.40; SDs = 0.59-0.90). The most frequently endorsed barriers were desire for additional GC information (M = 3.44; SD = 0.90), and GC logistic concerns (M = 2.71; SD = 0.80). No statistically significant differences for barriers and benefits scales were identified by place of residence (all ps ≥ 0.12). These findings highlight the importance of delivering culturally sensitive GC information to high-risk Latina BC survivors.
PMID: 35941731
ISSN: 2045-7634
CID: 5286772

Editorial: Cancer prevention, treatment and survivorship in the LGBTQIA community

Ussher, Jane M.; Quinn, Gwendolyn P.; Perz, Janette
SCOPUS:85165919310
ISSN: 2234-943x
CID: 5619822

Qualitative Findings From a Survey on Patient Experiences and Satisfaction with Lung Cancer Screening

Pérez-Morales, Jaileene; Pathak, Rashmi; Reyes, Monica; Tolbert, Haley; Tirbene, Rajwantee; Gray, Jhanelle E; Simmons, Vani N; Schabath, Matthew B; Quinn, Gwendolyn P
BACKGROUND:To reveal successes and potential limitations of the lung cancer screening program, we conducted a survey that included both quantitative and open-ended questions to measure patient experiences and satisfaction with screening. METHODS:We report on the five open-ended items related to barriers to returning for screening, experience with other cancer prevention screenings, positive and negative experiences, and suggestions for improving future appointments. The open-ended responses were analyzed using constant comparison method and inductive content analysis. RESULTS:Respondents (182 patients, 86% response rate for open-ended questions) provided generally positive comments about their lung cancer screening experience. Negative comments were related to desire for more information about results, long wait times for results, and billing issues. Suggestions for improvements included: scheduling on-line appointments and text or email reminders, lower costs, and responding to uncertainty about eligibility criteria. CONCLUSION/CONCLUSIONS:Findings provide insights about patient experiences and satisfaction with lung cancer screening which is important given low uptake. Ongoing patient-centered feedback may improve the lung cancer screening experience and increase follow-up screening rates.
PMCID:10052477
PMID: 36971270
ISSN: 1526-2359
CID: 5463072

Cancer patient and provider responses to companion scales assessing experiences with LGBTQI-affirming healthcare

Pratt-Chapman, Mandi L; Wang, Yan; Quinn, Gwendolyn P; Shirima, Sylvia; Adler, Sarah; Brazinskaite, Ruta; Kamen, Charles; Radix, Asa; Warren, Barbara; Eckstrand, Kristen; Lopez, Ana Maria
BACKGROUND/UNASSIGNED:Sexual and gender minority (SGM) persons are at a higher risk for some cancers and may have poorer health outcomes as a result of ongoing minority stress, social stigma, and cisnormative, heteronormative healthcare environments. This study compared patient and provider experiences of affirming environmental and behavioral cues and also examined provider-reported knowledge, attitudes, behaviors, and clinical preparedness in caring for SGM patients among a convenience sample. METHODS/UNASSIGNED:-tests compared continuous variables. Other results were reported using descriptive frequencies. RESULTS/UNASSIGNED:Both patient and provider samples were predominantly female sex assigned at birth, cisgender, and heterosexual. Providers were more likely than patients to report affirming cues in clinic, as well as the ability for patients to easily document their name in use and pronouns. Providers were more likely to report asking about patient values and preferences of care versus patients' recollection of being asked. Patients were more likely to report understanding why they were asked about both sex assigned at birth and gender identity compared to providers' perceptions that patients would understand being asked about both. Patients were also more likely to report comfort with providers asking about sex assigned at birth and gender identity compared to providers' perceptions of patient comfort. SGM providers had greater knowledge of SGM patient social determinants of health and cancer risks; felt more prepared to care for gay patients; were more likely to endorse the importance of knowing patient sexual orientation and gender identity; and were more likely to indicate a responsibility to learn about SGM patient needs and champion positive system changes for SGM patients compared to heterosexual/cisgender peers. Overall, providers wished for more SGM-specific training. CONCLUSION/UNASSIGNED:Differences between patient and provider reports of affirming environments as well as differences between SGM and heterosexual/cisgender provider care support the need for expanded professional training specific to SGM cancer care.
PMCID:10103145
PMID: 37064143
ISSN: 2234-943x
CID: 5465962

Study protocol for FUTURES: Testing a web-based reproductive health education program for adolescent and young adult males with sickle cell disease

Colton, Zachary A; Stanek, Charis J; Liles, Sophia M; Baker, Christian; Barnard-Kirk, Toyetta; Chan, Peter; McCorkle, Ben; Quinn, Gwendolyn P; Shen, Yvette; Theroux, Charleen I; Creary, Susan E; Nahata, Leena
Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.
PMCID:10370742
PMID: 37494379
ISSN: 1932-6203
CID: 5592182

Pediatric oncofertility care in limited versus optimum resource settings: results from 39 surveyed centers in Repro-Can-OPEN Study Part I & II

Salama, M; Nahata, L; Jayasinghe, Y; Gomez-Lobo, V; Laronda, M M; Moravek, M B; Meacham, L R; Christianson, M S; Lambertini, M; Anazodo, A; Quinn, G P; Woodruff, T K
PURPOSE/OBJECTIVE:As a secondary report to elucidate the diverse spectrum of oncofertility practices for childhood cancer around the globe, we present and discuss the comparisons of oncofertility practices for childhood cancer in limited versus optimum resource settings based on data collected in the Repro-Can-OPEN Study Part I & II. METHODS:We surveyed 39 oncofertility centers including 14 in limited resource settings from Africa, Asia, and Latin America (Repro-Can-OPEN Study Part I), and 25 in optimum resource settings from the USA, Europe, Australia, and Japan (Repro-Can-OPEN Study Part II). Survey questions covered the availability of fertility preservation and restoration options offered in case of childhood cancer as well as their degree of utilization. RESULTS:In the Repro-Can-OPEN Study Part I & II, responses for childhood cancer and calculated oncofertility scores showed the following characteristics: (1) higher oncofertility scores in optimum resource settings than in limited resource settings for ovarian and testicular tissue cryopreservation; (2) frequent utilization of gonadal shielding, fractionation of anticancer therapy, oophoropexy, and GnRH analogs; (3) promising utilization of oocyte in vitro maturation (IVM); and (4) rare utilization of neoadjuvant cytoprotective pharmacotherapy, artificial ovary, in vitro spermatogenesis, and stem cells reproductive technology as they are still in preclinical or early clinical research settings. CONCLUSIONS:Based on Repro-Can-OPEN Study Part I & II, we presented a plausible oncofertility best practice model to help optimize care for children with cancer in various resource settings. Special ethical concerns should be considered when offering advanced and innovative oncofertility options to children.
PMCID:9768400
PMID: 36542312
ISSN: 1573-7330
CID: 5431872

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

Block, Rebecca G; Sampson, Amani; Gagliardi, Julia; Augusto, Bianca; Santiago-Datil, Waleska; Schabath, Matthew B; Vadaparampil, Susan T; Quinn, Gwendolyn P
PMID: 35475655
ISSN: 2156-535x
CID: 5217472

Training clinicians in culturally relevant care: a curriculum to improve knowledge and comfort with the transgender and gender diverse population

Kreines, Fabiana Maria; Quinn, Gwendolyn P; Cardamone, Stefanie; Pi, Guillermo E; Cook, Tiffany; Salas-Humara, Caroline; Fino, Elizabeth; Shaw, Jacquelyn
PURPOSE/OBJECTIVE:To design a replicable simulation curriculum collaboratively with the transgender and gender diverse community to improve clinician knowledge and comfort with providing reproductive care to this population. METHODS:This is a prospective, single arm pre-post analysis of obstetrics and gynecology residents at a single academic institution after completion of a novel simulation curriculum. The primary outcome was the change in resident comfort and knowledge in providing transgender and gender diverse patient care. A thematic analysis of learner and standardized patient free text responses was analyzed for insights on perceived learner experiences. RESULTS:This curriculum was created with iterative feedback from the transgender community and involved only transgender and gender diverse-identified standardized patients. Thirty residents participated, with 22 responding to both the pre-and post-curriculum surveys, and 11 responding to a 6-month post-curriculum survey. There were significant improvements in learner comfort and knowledge after participation that were found to persist at 6 months. Qualitative analysis demonstrated that this was a positive and powerful learning experience for both residents and standardized patients. CONCLUSIONS:This simulation curriculum may be an effective and impactful tool to increase trainee comfort and knowledge of transgender and gender diverse patient care, which is important given the lack of physician training in the care for these individuals. By building the foundation with resident learners, the ultimate goal is to enhance the pool of clinicians confident and capable of caring for transgender and gender diverse patients, to increase access to care, and to improve health outcomes in this vulnerable population.
PMID: 36355246
ISSN: 1573-7330
CID: 5357432