{"title":"From Discussion to Action: Mapping the Oncofertility Referral Gap in Indian Breast Cancer Care.","authors":"Balasubramanian Venkitaraman, Sathyanarayanan M Shivkumaran, Lakshmi Jayachandran Susheela, Prithviraj Premkumar, Suhaildeen Kajamohideen","doi":"10.1177/21565333261445405","DOIUrl":"https://doi.org/10.1177/21565333261445405","url":null,"abstract":"<p><strong>Purpose: </strong>There is an increase in the incidence of breast cancer in young Indian women. With better oncological care leading to improved survival rates, fertility preservation (FP) has become an important part.</p><p><strong>Methods: </strong>A cross-sectional survey done across oncologists in India. The questionnaire included questions on their demographics and questions on knowledge of oncofertility, attitude toward discussing FP, and their current clinical practices. We used descriptive statistics to analyze the data using SPSS software.</p><p><strong>Results: </strong>A total of 123 oncologists completed the questionnaire. Most of them were surgical oncologists (68.3%). The majority (55%) had 3-10 years of experience, working in metropolitan areas (60%), and at teaching hospitals (58%). Their knowledge of oncofertility was assessed to be good. They also had a very positive attitude, with 89% being comfortable in discussing FP with their patients. However, we found a big gap, with nearly half (47%) of the oncologists saying that less than 25% of their patients ask questions pertaining to fertility. Only 22.8% of the oncologists had successfully referred at least one patient for a fertility consultation. This shows a large gap between knowledge of oncologists and actual discussion and final outcomes.</p><p><strong>Conclusion: </strong>Indian oncologists appear to have a sound knowledge and a positive attitude; however, there is a major gap between their awareness and what happens in practice. The main problem seems to be patient's perspective with patients not willing or not able to pursue these options, even when they are made aware about them.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261445405"},"PeriodicalIF":1.2,"publicationDate":"2026-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771779","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Distress in Adolescent and Young Adult Patients with Cancer: Age- and Gender-Related Differences in a Retrospective Screening Study.","authors":"Takako Ikegami, Naho Matsubara, Hiroto Ishiki, Mana Ota, Ayana Hirose, Ayaka Ishikawa, Rumi Nishimura, Naruaki Kawasaki, Sayaka Arakawa, Yuki Kojima, Takatoshi Hirayama, Ryoko Udagawa, Naoko Inamura, Takuma Koinuma, Takashi Kawaguchi, Yusuke Hori, Eriko Satomi","doi":"10.1177/21565333261445410","DOIUrl":"https://doi.org/10.1177/21565333261445410","url":null,"abstract":"<p><strong>Background: </strong>Adolescent and young adult (AYA) patients with cancer frequently experience psychosocial distress, yet age- and gender-related differences in distress in routine care are not fully understood.</p><p><strong>Purpose: </strong>To examine age- and gender-related differences in distress and specific psychosocial concerns among AYA patients with cancer using routine distress screening.</p><p><strong>Methods: </strong>This retrospective single-center study included AYA patients aged 15-39 years who completed distress screening with the Distress Thermometer (DT) and problem checklist prior to first-line cancer treatment. Clinically significant distress was defined as DT ≥ 4 based on NCCN guidelines and institutional practice. Distress levels and checklist items were compared across age groups (teens, 20s, 30s), gender, cancer stage, and time from diagnosis to screening.</p><p><strong>Results: </strong>Among 213 patients, clinically significant distress (DT ≥ 4) was more frequent among teenage males than among males in their 30s. Female patients reported more emotional concerns across all ages, while fertility-related concerns were reported by both males and females. Financial concerns, reflecting financial toxicity, were most common among patients in their 30s and those with advanced-stage disease. A shorter interval between diagnosis and screening was associated with higher distress levels.</p><p><strong>Conclusions: </strong>Using the standard DT cutoff of ≥4, distress among AYA patients with cancer varied significantly by age and gender. Teenage males represented a particularly vulnerable group with elevated distress at diagnosis, while financial toxicity was a major concern among patients in their 30s. These findings emphasize the need for early, age- and gender-tailored psychosocial screening and support in AYA oncology care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261445410"},"PeriodicalIF":1.2,"publicationDate":"2026-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nele Loecher, Dinorah Martinez Tyson, Rachel T Webster, Kristin Kosyluk
{"title":"The Effect of Familiarity and Caregiver Stigma on Cultural Models of Childhood and Adolescent Cancer: A Freelisting Approach.","authors":"Nele Loecher, Dinorah Martinez Tyson, Rachel T Webster, Kristin Kosyluk","doi":"10.1177/21565333261444707","DOIUrl":"https://doi.org/10.1177/21565333261444707","url":null,"abstract":"<p><strong>Purpose: </strong>Child, adolescent, young adult survivors of cancer (CAYAs) experience social and psychological hardships after treatment completion. As CAYAs transition to adult contexts, their cancer identity and its associated public perceptions may shape how they are treated in these settings. It is critical to understand the content of these beliefs in same-aged peers to help CAYAs navigate them. To explore the associations and drivers that underlie childhood cancer stereotype formation and stigma for CAYA survivors, college students listed their associations with this concept and completed measures of familiarity and stigma.</p><p><strong>Methods: </strong>We used freelisting to explore cultural models of childhood cancer. College students (<i>N</i> = 125) wrote down up to 15 words that they associated with childhood cancer. Participants also completed the Level of Contact Report and the Family Questionnaire, adapted for CAYA cancer, to assess stereotype differences based on established contributors to cancer-related stigma.</p><p><strong>Results: </strong>Participants (mean age = 20.77 years, standard deviation = 5.15 years) listed the most common diagnoses and treatments. Those with lower familiarity (no personal contact; <i>n</i> = 79) more frequently mentioned organizations. Those with greater familiarity (personal contact, <i>n</i> = 46) more frequently listed symptoms. Participant lists also differed based on family stigma toward CAYA cancer (mean[SD] = 24.11 [6.91], range = 12-73). Participants with higher stigmatization scores (median split at ≥ 24) listed more media-driven, warrior-focused imagery, while participants with lower stigma scores (<24) listed empathetic terms more frequently.</p><p><strong>Conclusion: </strong>These findings illustrate the influence of media and cancer-focused organizations in shaping cultural domains of CAYA cancer in a population that has low personal familiarity with the disease.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261444707"},"PeriodicalIF":1.2,"publicationDate":"2026-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Mary A Burns, Suncica Lah, Cecilia Law, Clarissa E Schilstra, Sarah J Ellis, Claire E Wakefield, Ursula M Sansom-Daly, Richard J Cohn, Glenn M Marshall, Alistair Lum, Barb Donnan, Thomas Walwyn, Amanda Carter, Philippa Fielden, Cinzia R De Luca, Belinda Barton, Donna Drew, Fiona Maguire, Cath O'Dwyer, Joanna E Fardell
{"title":"High School Cancer Experience and Age at Diagnosis: Perspectives of Adolescents, Young Adults, and Parents.","authors":"Mary A Burns, Suncica Lah, Cecilia Law, Clarissa E Schilstra, Sarah J Ellis, Claire E Wakefield, Ursula M Sansom-Daly, Richard J Cohn, Glenn M Marshall, Alistair Lum, Barb Donnan, Thomas Walwyn, Amanda Carter, Philippa Fielden, Cinzia R De Luca, Belinda Barton, Donna Drew, Fiona Maguire, Cath O'Dwyer, Joanna E Fardell","doi":"10.1177/21565333261438095","DOIUrl":"https://doi.org/10.1177/21565333261438095","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescents affected by cancer experience unique educational and social challenges during high school due to cancer diagnosis, treatment, and survivorship. High school experiences may also be impacted by developmental stage at diagnosis. This study aims to compare the high school experiences related to age at diagnosis (childhood or adolescence) from adolescent and young adult and parent perspectives.</p><p><strong>Methods: </strong>We used purposive sampling to recruit youths and parents to semistructures interviews, including 18 youths (11-23 years), diagnosed during childhood (<i>n</i> = 8; age at diagnosis M = 6.8) and adolescence (<i>n</i> = 10, age at diagnosis M = 13.8), and 13 parents (34-65 years), of youths diagnosed in childhood (<i>n</i> = 8, child age at diagnosis M = 6.9) and adolescence (<i>n</i> = 5, child age at diagnosis M = 13.6). Interviews were transcribed verbatim and analyzed thematically.</p><p><strong>Results: </strong>We identified two common themes for youths: <i>Academic Calibration</i>, highlighting the adjustments to academic performance and engagement throughout the cancer journey, and <i>(Dis)connection</i>, describing shifts in social identity and peer relationships. For parents, themes included: <i>Navigating School Engagement</i>, reflecting challenges with education engagement, and <i>Social Flux</i>, capturing changes in social functioning and peer interactions. Distinct subthemes were identified across all youths, including Missing Out, Social Isolation and School Takes a Back Seat, detailing the social and academic experiences of youths diagnosed in adolescence.</p><p><strong>Conclusions: </strong>This study underscores the shared and distinct challenges faced by adolescents affected by cancer in high school. Disruptions to social networks faced by adolescents with cancer and enduring academic challenges of adolescents diagnosed in childhood underscore the need for tailored, comprehensive support.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261438095"},"PeriodicalIF":1.2,"publicationDate":"2026-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771917","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarita Pathak Desai, Lindsay Fuzzell, Paige W Lake, Moran Snir, Emilie Simmons, Tara Schmidlen, Jonathan Metts, Gwendolyn P Quinn, Susan T Vadaparampil
{"title":"Development and Pilot Evaluation of REFLECT: A Digital Health Application Supporting Fertility and Genetic Decision-Making in Adolescent and Young Adult Oncology.","authors":"Sarita Pathak Desai, Lindsay Fuzzell, Paige W Lake, Moran Snir, Emilie Simmons, Tara Schmidlen, Jonathan Metts, Gwendolyn P Quinn, Susan T Vadaparampil","doi":"10.1177/21565333261445409","DOIUrl":"https://doi.org/10.1177/21565333261445409","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescent and young adult (AYA) patients with cancer face complex decisions about family building, often compounded by misconceptions about hereditary cancer risk. Although guidelines recommend early discussion of fertility- and genetics-related risks, these topics are inconsistently integrated into routine care. To address this gap, we developed <i>Reproductive Education and Fertility Links for Cancer Treatment</i> (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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>Participants (<i>N</i> = 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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261445409"},"PeriodicalIF":1.2,"publicationDate":"2026-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771471","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hailie Ciomperlik, Sarah Hmaidan, Morgan Bou Zerdan, Payton Ten Hagen, Terri Woodard, Laura Detti, Laurie McKenzie
{"title":"Impact of Texas House Bill 1649 on Fertility Preservation Utilization and Awareness.","authors":"Hailie Ciomperlik, Sarah Hmaidan, Morgan Bou Zerdan, Payton Ten Hagen, Terri Woodard, Laura Detti, Laurie McKenzie","doi":"10.1177/21565333261444705","DOIUrl":"https://doi.org/10.1177/21565333261444705","url":null,"abstract":"<p><strong>Purpose: </strong>To evaluate the impact of Texas House Bill 1649 (HB 1649) on access to fertility preservation (FP) services among oncology patients, with a focus on insurance coverage, FP utilization, and disparities by gender and race.</p><p><strong>Methods: </strong>This retrospective cohort study was conducted at a National Cancer Institute-designated Comprehensive Cancer Center in Texas. Oncology patients undergoing FP consultations between January 1, 2024, and December 31, 2024, were included. The primary outcome was the proportion of diagnosed patients with cancer eligible for FP insurance coverage under HB 1649. Secondary outcomes included FP utilization, patient awareness of insurance benefits, and social disparities in FP.</p><p><strong>Results: </strong>Of 580 reproductive-aged patients with cancer evaluated for FP, 405 Texas residents (307 females, 98 males; mean age 31 years) were included. Among these, 242 (59.8%) had FP coverage under HB 1649 and 163 (40.2%) did not, most commonly due to out-of-state, government-funded, or military insurance. Demographic characteristics, including gender, age, and ethnicity, were similar between groups. FP interest was high in both groups (76.5% vs. 74.2%); however, coverage was associated with greater benefit awareness (9.9% vs. 1.2%, <i>p</i> < 0.001) and higher FP completion (33.1% vs. 23.3%, <i>p</i> = 0.045). Multivariable analysis showed that interest in FP, male sex, and insurance coverage were positive predictors of FP completion, while Black race was associated with lower completion.</p><p><strong>Conclusion: </strong>HB 1649 has improved FP access by reducing financial barriers; however, gender and racial disparities in FP utilization and low awareness of insurance benefits persist, highlighting the need for targeted interventions.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261444705"},"PeriodicalIF":1.2,"publicationDate":"2026-04-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147771943","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sheila Hartstein, Alexa Dang, Richard Musoke, Daegan Sit, Matthew Chan, Karen Goddard, Nicole Chau, Jonn Wu, Eric Berthelet, Eric Tran, Sarah Nicole Hamilton
{"title":"Treatment, Outcomes, and Late Effects in Adolescent and Young Adult Nasopharyngeal Carcinoma in a Provincial Population.","authors":"Sheila Hartstein, Alexa Dang, Richard Musoke, Daegan Sit, Matthew Chan, Karen Goddard, Nicole Chau, Jonn Wu, Eric Berthelet, Eric Tran, Sarah Nicole Hamilton","doi":"10.1177/21565333261445411","DOIUrl":"https://doi.org/10.1177/21565333261445411","url":null,"abstract":"<p><strong>Purpose: </strong>Nasopharyngeal carcinoma (NPC) is a rare cancer, especially in nonendemic regions such as North America, occurring in a bimodal age distribution with the first peak in adolescents and young adults (AYA). Limited data exist on treatment outcomes in this group. The purpose of our study is to evaluate treatment outcomes of NPC in the AYA population in British Columbia, Canada, and evaluate late effects.</p><p><strong>Methods: </strong>We conducted a retrospective cohort study of AYA patients (ages of 15-39 years at diagnosis) diagnosed with NPC and treated between 2000 and 2015. Demographics, treatment outcomes, and late toxicities were collected. Overall survival (OS) and disease-free survival (DFS) were analyzed using the Kaplan-Meier and Cox regression. Locoregional recurrence and distant metastatic recurrence were evaluated using the competing risk method. Late effects were described qualitatively and quantitatively.</p><p><strong>Results: </strong>The cohort included 97 patients: 93 received curative intent treatment, 3 received palliative treatment, and 1 was excluded from survival analysis. Five-year OS rates were 81% (Stage I/II), 80% (Stage III), and 68% (Stage IV), with corresponding DFS rates of 78%, 77%, and 66%. The addition of neoadjuvant and/or adjuvant chemotherapy to radiotherapy was associated with improved survival. Advanced-stage disease had a higher incidence of locoregional relapse. Common late toxicities included xerostomia, hearing loss, epistaxis, and hypothyroidism.</p><p><strong>Conclusion: </strong>Although survival rates in our cohort were comparable to existing literature, the rate of late toxicities was high. These findings support the need for AYA-tailored treatment strategies and survivorship care to minimize long-term complications and optimize quality of life.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261445411"},"PeriodicalIF":1.2,"publicationDate":"2026-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147728967","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Young Adult Cancer Patients' Use of Specialty Palliative Care: Secondary Analysis of a Population-Based Study.","authors":"Maggie Rogers, Donna K McClish, J Brian Cassel","doi":"10.1177/21565333261444301","DOIUrl":"https://doi.org/10.1177/21565333261444301","url":null,"abstract":"<p><p>A secondary analysis of a population-based study of cancer patients' use of specialty palliative care (SPC), 2012-2015, was conducted, comparing a young adult (YA) cohort of those who died at age 21-39 years (<i>n</i> = 112); a cohort of those who died at 40-64 years old (<i>n</i> = 2957); and an older cohort that died at age 65 or older (<i>n</i> = 8949). The YA cohort had a higher rate of SPC use (44.6%) compared to the middle (34.3%, <i>p</i> = 0.0244) and older cohorts (21.1%, <i>p</i> < 0.0001). The cohorts did not differ significantly in the timing of SPC, which often occurred in the final days or weeks prior to death.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261444301"},"PeriodicalIF":1.2,"publicationDate":"2026-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147722992","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Lauren V Ghazal, Nick Giallourakis, Yolanda Murphy, Kayla Fulginiti, Natasha Renee Burse
{"title":"One Herd: A Community Storytelling Campaign for Equity in Adolescent and Young Adult Cancer Survivorship.","authors":"Lauren V Ghazal, Nick Giallourakis, Yolanda Murphy, Kayla Fulginiti, Natasha Renee Burse","doi":"10.1177/21565333261444303","DOIUrl":"https://doi.org/10.1177/21565333261444303","url":null,"abstract":"<p><strong>Background: </strong>Community-based organizations play an essential yet underrecognized role in addressing health inequities faced by adolescent and young adult (AYA) cancer survivors, particularly those from underrepresented communities. Elephants and Tea, a nonprofit organization, launched One Herd, a digital storytelling and health equity campaign designed to elevate lived experiences of underserved AYA survivors. This article describes the conception and development of that campaign and presents findings from its needs assessment.</p><p><strong>Methods: </strong>One Herd followed a five-phase process (1) assembling a multidisciplinary advisory team of underrepresented AYA survivors; (2) identifying campaign priorities and conducting a national needs assessment to inform content development; (3) analyzing survey findings and creating survivorship-centered content; (4) disseminating content through digital, print, webinar, and live storytelling platforms; and (5) evaluating campaign reach and perceived impact. A national needs assessment identified social and structural barriers to equitable survivorship care, guided by social determinants of health and community-engaged frameworks.</p><p><strong>Results: </strong>Eighty-one AYA cancer survivors completed the survey; 76 were included in the final analysis. Participants reported multilevel inequities, including limited access to fertility preservation resources, perceived bias and discrimination in health care, and unmet needs for peer connection and identity-affirming support. Findings informed the development of survivor-centered digital storytelling and educational materials for community and provider audiences. Dissemination formats included a print and digital magazine, webinars, and live storytelling events, with workforce education integrated into Elephants and Tea's AYA Program for Oncology Workforce Education and Resources. Early feedback identified survivor stories as the most impactful campaign component.</p><p><strong>Conclusions: </strong>One Herd demonstrates how community-led, research-informed storytelling can operationalize narrative equity and bridge survivor experience with system-level education in AYA cancer care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261444303"},"PeriodicalIF":1.2,"publicationDate":"2026-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147698920","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Sarita Pathak Desai, Whitney S Rice, Paige Lake, Elizabeth Reisinger Walker, Marie Barnett, Bianca Augusto, Gwendolyn P Quinn, Susan T Vadaparampil
{"title":"Dreaming Big: Providing American Society of Clinical Oncology Guideline Concordant Oncofertility Care for Adolescents and Young Adults.","authors":"Sarita Pathak Desai, Whitney S Rice, Paige Lake, Elizabeth Reisinger Walker, Marie Barnett, Bianca Augusto, Gwendolyn P Quinn, Susan T Vadaparampil","doi":"10.1177/21565333261440154","DOIUrl":"10.1177/21565333261440154","url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261440154"},"PeriodicalIF":1.2,"publicationDate":"2026-04-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13133869/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147638888","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}