Journal of adolescent and young adult oncology最新文献

{"title":"Perceived Versus Demonstrated Oncofertility Knowledge Among Oncology Providers.","authors":"Anjani D Kapadia, Sang Mee Lee, Lindsay F Schwartz","doi":"10.1177/21565333261464968","DOIUrl":"10.1177/21565333261464968","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescents and young adults (AYAs) with cancer are at risk for treatment-related infertility, yet gaps in fertility preservation (FP) counseling persist. While patient-level barriers are well described, provider-level factors remain understudied. We evaluated oncology providers' perceived versus demonstrated knowledge of FP guidelines and identified barriers to oncofertility care.</p><p><strong>Methods: </strong>We conducted a cross-sectional survey of oncology providers at a single academic medical center caring for postpubertal AYA patients receiving gonadotoxic therapy. The survey assessed demographics, prior FP training, counseling and referral practices, and perceived barriers. Participants self-rated their FP knowledge and completed guideline-based clinical vignettes to assess demonstrated knowledge, enabling direct comparison of perceived versus demonstrated knowledge.</p><p><strong>Results: </strong>Providers reported limited formal oncofertility training, with most rating prior education as fair or poor. Knowledge varied across FP strategies, with high familiarity for ovarian suppression and sperm cryopreservation and lower familiarity for ovarian transposition and male-directed surgical techniques. A trend toward discordance between perceived and demonstrated knowledge was observed but was not statistically significant. Awareness of institutional FP resources and referral pathways was limited. Providers most frequently cited patient-level barriers, including treatment urgency and cost, although provider- and system-level barriers were also reported.</p><p><strong>Discussion: </strong>Oncology providers may overestimate oncofertility knowledge, contributing to inconsistent counseling and missed opportunities for FP. This pattern, combined with gaps in training and awareness of institutional protocols, highlights the need for competency-based education, clearer institutional communication, and improved referral systems. Objective assessments may better identify knowledge gaps and guide targeted interventions to support guideline-concordant FP care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261464968"},"PeriodicalIF":1.6,"publicationDate":"2026-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13601967/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148338633","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}

{"title":"Coming of Age with Cancer: A Developmentally Grounded, Biopsychosocial Approach to Adolescent and Young Adult Cancer Survivorship.","authors":"Abigail Lustyik, Brooke Cherven, Yvette P Conley, Sarah M Belcher","doi":"10.1177/21565333261464966","DOIUrl":"10.1177/21565333261464966","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261464966"},"PeriodicalIF":1.6,"publicationDate":"2026-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13322211/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148338486","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}

{"title":"Oncofertility Needs Assessment of Adolescent/Young Adult Cancer Survivors in Saskatchewan, Canada.","authors":"Sierra K Leonard, Huyen T Vu, Saima Alvi, Elke E Mau, Trustin S Domes, Laura Hopkins, Paul R D'Alessandro","doi":"10.1177/21565333261464960","DOIUrl":"https://doi.org/10.1177/21565333261464960","url":null,"abstract":"<p><p>This cross-sectional study described oncofertility experiences of adolescent/young adult cancer survivors in Saskatchewan, Canada. Thirty-two AYAs (21.2 years, 56.3% male, 32.3% Indigenous) completed questionnaires. Medical records were reviewed. Distance to single centralized fertility clinic was calculated using geocoding software. 46.6% recalled oncofertility discussions, 35.5% had discussions documented, and 22.6% received fertility preservation referrals. Barriers included lack of available procedures and cost, but not travel. AYAs diagnosed ≤12 years were less likely to have FP referral (<i>p</i> = 0.03). Sex, treatment-related infertility risk, and distance did not impact discussion or FP referral odds. These data will inform our provincial oncofertility algorithm.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261464960"},"PeriodicalIF":1.6,"publicationDate":"2026-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148338656","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":"Addressing the Self-Reported Needs of Adolescents and Young Adults With Cancer.","authors":"Elysse M Casson, Melody A Griffith, Whitney L Archer, Joan L Ralph Webber, Emily R Thompson, Allison Rosenthal","doi":"10.1177/21565333261457578","DOIUrl":"https://doi.org/10.1177/21565333261457578","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescents and young adults (AYAs) with cancer have unique physical, emotional, and social challenges. We aimed to identify key concerns among AYAs with cancer, evaluate pathways for connecting patients with resources, and inform the development of an AYA oncology program.</p><p><strong>Methods: </strong>This study was conducted at Mayo Clinic in Arizona and included English-speaking patients aged 18-39 years with recently diagnosed cancer. Participants completed a modified Needs Assessment Service Bridge questionnaire, which assessed patient-perceived needs with 39 items spanning 7 domains. An AYA nurse navigator discussed each participant's results with them and connected them to the desired resources.</p><p><strong>Results: </strong>Of 52 eligible patients, 32 (62%) completed the questionnaire. Among them, 30 (94%) reported unmet needs in at least 1 domain and 19 (59%) reported unmet needs in 5 or more domains. The domains with the most frequently reported needs were health behaviors and wellness (81%), emotional health (72%), finances and everyday needs (59%), and work- and education-related assistance (56%). Younger participants reported more needs related to school life and scholarships/loans than did older participants. No significant differences were observed between the responses of men and women. Of 133 total needs identified by all participants, 93 (70%) were addressed by connecting patients to relevant resources.</p><p><strong>Conclusion: </strong>Systematic assessment of AYA needs and targeted connection to resources are essential for individualized and developmentally appropriate care. The current study identified key service gaps at our institution and will guide the continued evolution of our comprehensive AYA oncology program.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261457578"},"PeriodicalIF":1.6,"publicationDate":"2026-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148264547","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":"Impact on Fertility Outcomes in Survivors after Oncological Treatment of Non-Hodgkin Lymphoma: A Systematic Review and Meta-Analysis.","authors":"Dorothea Wunder, Edvokia Stefanou, Angela Vidal, Janna Pape, Tanya Karrer, Urban Novak, Michael von Wolff","doi":"10.1177/21565333261451815","DOIUrl":"https://doi.org/10.1177/21565333261451815","url":null,"abstract":"<p><strong>Purpose: </strong>Non-Hodgkin lymphoma (NHL) is a heterogeneous group of cancers. Published recommendations and guidelines for fertility preservation are very general and heterogeneous. Therefore, a very first meta-analysis analyzing the worldwide-published data on the risk of infertility after treatment of NHL is required to better counsel patients regarding fertility issues and to develop further strategies to evaluate the gonadotoxicity of treatments in NHL.</p><p><strong>Methods: </strong>A systematic literature search was conducted using Medline, Embase, and Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials (CENTRAL), including articles published since 2000. Exclusion criteria were cases with disease relapse, follow-up of <1 year, testicular NHL, studies with <40% reproductive markers, and case reports. A total of 4602 records were identified. For the systematic review, 58 studies met the inclusion criteria. In this meta-analysis, 51 studies were included.</p><p><strong>Results: </strong>The prevalence of expected infertility is 27% (95% confidence interval [CI] 0.20-0.37) overall, 23% (95% CI: 0.14-0.35) in females, and 35% (95% CI: 0.27-0.44) in males. It is highest after chemotherapy and radiotherapy to the pelvis and testis ± bone marrow transplantation, 43% (95% CI: 0.20-0.69) in females and 57% (95% CI: 0.21-0.86) in males. After alkylating agents in females, it is 24% (95% CI: 0.17-0.34).</p><p><strong>Conclusion: </strong>The results of this review and meta-analysis indicate a broad heterogeneity of data regarding the risk of infertility. Therefore, fertility counseling and, if necessary, fertility preservation measures are mandatory before oncologic treatment for NHL. Prospective studies stratified by chemotherapy regimen and including new treatment regimens are urgently needed.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261451815"},"PeriodicalIF":1.2,"publicationDate":"2026-06-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148239265","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":"The Development of Parent Support Group Program in Young Adult Cancer Care.","authors":"Joan W Hanania, Sarah Concannon Fay, Meghan Donovan, Mary Kenney, Cristina Pozo-Kaderman","doi":"10.1177/21565333261456936","DOIUrl":"10.1177/21565333261456936","url":null,"abstract":"<p><strong>Purpose: </strong>There is increasing recognition of the critical need to support informal caregivers of young adults with cancer, including parents. Given the unique developmental needs of young adults, cancer diagnosis and treatment have a profound impact on their parents. However, there is limited psychosocial support provided to parents of young adults with cancer to date.</p><p><strong>Methods: </strong>Following a program improvement framework, a virtual six-session parent support group curriculum was developed and adapted to provide specialized psychosocial care to parents of young adults receiving cancer care in 2025. The participants provided feedback and completed an evaluation.</p><p><strong>Results: </strong>Thirty-four parents (85% female) of young adults participated, with 19 (55%) completing the evaluation. The majority of participants evaluated the program as accessible (95%) and relevant (84%) to the parent's shared concerns and experiences. The program was highly rated as supportive (95%) engaging (100%) and was unanimously recommended to other parents (100%). Additionally, parents reported feeling more connected to others (79%), empowered with knowledge (90%), and an improved perceived capacity (79%) to navigate the unique concerns related to their young adult's cancer.</p><p><strong>Conclusion: </strong>This novel parent program has the potential to address the distinct psychosocial needs among parents, which are currently overlooked in existing models of young adult cancer care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"21565333261456936"},"PeriodicalIF":1.6,"publicationDate":"2026-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148163090","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":"Digital Tools Used to Enhance the Quality of Life and Well-Being of Adolescent and Young Adult Cancer Survivors: A Systematic Review of the Literature.","authors":"Amandine Bertrand, Noémie Escot, Magali Girodet, Thomas Congiusta, Anne Sophie Baudry, Charlotte Demoor, Véronique Christophe","doi":"10.1177/21565333251377393","DOIUrl":"10.1177/21565333251377393","url":null,"abstract":"<p><p>The number of adolescent and young adult cancer survivors (AYACSs) is increasing due to advancements in therapies. Despite these improvements, 70% of survivors experience long-term side effects. This systematic review aims to identify digital tools that enhance the quality of life and well-being of AYACSs aged 15-29 years. The review was conducted using four databases: PubMed, Science Direct, Cochrane, and PsycINFO (OVID platform). Articles from bibliographic references of selected studies were also included if relevant. The search followed Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines and included studies published between January 2014 and December 2024 that described digital tools focusing on quality of life and/or well-being. Titles and abstracts were independently assessed by two reviewers, with a third reviewer resolving disagreements. The initial search identified 291 articles, updated in December 2024. After screening, 285 articles were excluded for not meeting the inclusion criteria. Three studies met the criteria, focusing on interventions related to information dissemination, physical activity, and psychological support. These studies, conducted in the United States and Australia between 2015 and 2024, included randomized controlled trials with measured outcomes related to quality of life and/or well-being. The findings suggest that digital tools can improve the quality of life of AYACSs, particularly through peer interaction and personalized content. However, the limited number of studies and participants highlights the need for further research. The review also discusses challenges in involving AYACSs in digital programs and suggests optimizing digital tools by promoting peer links, integrating social networks, and considering self-determination theory.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"165-170"},"PeriodicalIF":1.2,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145040100","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":"Real World Data Identifies Care Needs in Adolescent and Young Adult Patients with Lymphoma: A Matched Cohort Study.","authors":"John Mariano, Myla Strawderman, Eric Snyder, Tina Faugh, Danielle S Wallace, Clive S Zent, Paul Barr, Patrick M Reagan, Jonathan W Friedberg, Carla Casulo","doi":"10.1177/21565333251370939","DOIUrl":"10.1177/21565333251370939","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescent and young adult (AYA) cancer patients have unique nononcologic challenges compared to adult and pediatric counterparts. National guidelines highlight unmet care needs in mental, physical, and sexual/reproductive health domains. We present a single institution retrospective matched cohort study exploring the feasibility of using electronic medical record (EMR) to identify nononcologic domains correlating to unmet care needs in AYA patients with lymphoma compared with matched controls.</p><p><strong>Methods: </strong>AYA patients with lymphoma from 2014 to 2020 were compared to age/sex matched controls without cancer. The groups were queried using a novel EMR assessment prior to diagnosis and during the 1-year period after diagnosis. Prevalence and incidence of nononcologic care domains were compared.</p><p><strong>Results: </strong>Patients with lymphoma had higher rates of chronic pain and analgesic use (15% vs. 1%, <i>p</i> < 0.0001, and 60.84% vs. 29.33% <i>p</i> < 0.0001) prior to diagnosis and more fertility preservation appointments compared to controls. One year after diagnosis, there were higher rates of anxiety (29% vs. 21%, <i>p</i> < 0.017), antidepressant use (26% vs. 14%, <i>p</i> < 0.0003), opioid abuse (4% vs. 0.69%, <i>p</i> < 0.007), chronic pain (15% vs. 1%, <i>p</i> < 0.0001), analgesic use (80% vs. 13%, <i>p</i> < 0.0001), influenza vaccination (16% vs. 0.69% <i>p</i> < 0.0001), and reproductive endocrinology and infertility appointments (21.7% vs. 1%, <i>p</i> < 0.0001) in the lymphoma group.</p><p><strong>Conclusion: </strong>EMR can feasibly track institutional-level nononcologic care domains in AYA patients to frame development of institution-specific interventional studies to address care gaps and design prospective patient surveys to correlate to patient-identified concerns.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"171-178"},"PeriodicalIF":1.2,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144954968","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":"\"Why Would You Say That? That Is the Worst Thing You Could Possibly Say\": Communication Work Among Young Breast Cancer Survivors.","authors":"Laura E Miller","doi":"10.1177/21565333251376241","DOIUrl":"10.1177/21565333251376241","url":null,"abstract":"<p><strong>Purpose: </strong>Communication is a salient aspect of coping with cancer. Research suggests that young adult cancer survivors may experience unique challenges, including social isolation, fertility and family planning concerns, dating and marriage, and financial challenges. Little is known, however, about the types of communicative work young breast cancer survivors face.</p><p><strong>Methods: </strong>A total of 25 young breast cancer survivors between the ages of 18 and 39 participated in semi-structured interviews. The average age of the participants at the time of diagnosis was 34 (range = 26-39 years). Constant comparative analytic methods revealed themes relating to the types of communication work participants experienced.</p><p><strong>Results: </strong>Communication work was common among the participants. Specifically, the data revealed various types of communication work, including information work, relational work, emotion work, identity work, and coordination work.</p><p><strong>Conclusions: </strong>Communicative work persisted throughout breast cancer survivorship. Breast cancer survivors' loved ones should be cognizant of such challenges to promote empathic conversations across the cancer trajectory.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"205-211"},"PeriodicalIF":1.2,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145015323","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":"Adolescent and Young Adult Cancer Patient Characteristics and Palliative Care Trends in an Asian Tertiary Cancer Center.","authors":"You Kai Poh, Shi Yun Giovanna Wong, Dai Lin Goh, Yu Ke, Victoria Hwei May Wong","doi":"10.1177/21565333251386711","DOIUrl":"10.1177/21565333251386711","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescent and young adult oncology patients represent a unique group with complex needs, yet data on palliative care utilization remain scarce in the Asian population. The definition of this group remains heterogeneous across organizations, and it is unclear whether extending the age range beyond conventional cutoffs affects observed patterns of care. We conducted a retrospective cohort study to describe palliative care utilization and end-of-life outcomes among oncology patients aged 16-45 years at a tertiary cancer center in Singapore.</p><p><strong>Methods: </strong>Oncology patients aged 16-45 referred to the palliative team from 2011 to 2021 were identified using institutional databases. Chi-square tests and sensitivity analysis were used to compare outcomes across age groups. The timing of last treatment relative to palliative referral was described. Multivariable logistic regression was performed to identify predictors of aggressive care.</p><p><strong>Results: </strong>Median age was 37 years; 58.8% were female; 83.6% of patients were deceased at the time of study. There was a trend toward earlier referrals in recent years, including during the COVID-19 pandemic. Outcomes including cause of death, place of death, rates of early/late referral, and aggressive care did not differ significantly across age groups. Timing of referral was the key independent factor associated with poor end-of-life outcomes including aggressive treatment.</p><p><strong>Conclusion: </strong>Referral patterns and end-of-life care intensity are consistent across ages through 45 years. Late palliative referrals were associated with higher usage of aggressive treatment and death in hospital. Findings support integrated, timely access to palliative care in this group and validate flexibility in the definition of age ranges.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"212-219"},"PeriodicalIF":1.2,"publicationDate":"2026-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145258240","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}