Journal of adolescent and young adult oncology最新文献

{"title":"A Content Analysis of #Childhoodcancer Chatter on X.","authors":"Sherry Pagoto, Cameron Cordaway, Andie Napolitano, Jessica Foy, Cindy Pan, Keith Bellizzi","doi":"10.1089/jayao.2024.0117","DOIUrl":"https://doi.org/10.1089/jayao.2024.0117","url":null,"abstract":"<p><p>Over a half million children are living with cancer in the United States. Social media platforms offer unique opportunities for cancer communication by public health organizations as well as health care providers, scientists, patients, and caregivers. Given the dearth of research on childhood cancer communication, the present study aimed to examine the nature of tweets on the social media platform X (formerly Twitter) that used the hashtag #childhoodcancer, the types of these tweets that attracted the most retweets, the types of users tweeting about childhood cancer (e.g., individuals, health care professionals), and the nature of tweets made by the different types of users. We performed a content analysis of tweets we captured on X via NCapture in October and December 2022. Of the 3217 tweets captured, we randomly sampled 1000 eligible tweets and manually double-coded them. Interrater agreement was 83% (κ = 0.75). Results revealed six themes in the tweets, including fundraising (21.2%), advocacy (20.2%), motivational (17.5%), educational (15.3%), science (12.8%), and shout-outs (12.1%). Motivational, advocacy, and science tweets attracted more retweets than fundraising tweets and shout-outs (<i>p</i> < 0.001). Individuals (i.e., patients, caregivers, and advocates tweeting on their own behalf) and nonprofit organizations made a majority of the tweets at 41.5% and 38.6%, respectively, followed by health care professionals (8.7%), academic and/or medical centers (4.2%), and for-profit companies (3.5%). Childhood cancer communication on X is dominated by individuals doing advocacy and fundraising. X may provide important opportunities for public health messaging and science communication about childhood cancer.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142894417","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":"Immune Checkpoint Inhibitors in Patients with Testicular Cancer: A Systematic Review.","authors":"Carlos Eduardo Salazar-Mejía, Rosalaura Virginia Villarreal-González, Oscar Vidal-Gutiérrez, Carlos de la Cruz-de la Cruz, Estefanía Guadarrama-Rendón, Sofia Alejandra Alvarado-Ruiz, Andrea Sarahi Guerra-Garza, Ramiro Quiroz-Huerta, Karina Alicia Salazar-Salazar, Neri Alejandro Alvarez-Villalobos","doi":"10.1089/jayao.2024.0056","DOIUrl":"https://doi.org/10.1089/jayao.2024.0056","url":null,"abstract":"<p><p>Germ cell tumors (GCTs) are chemosensitive neoplasms with high cure rates; however, a small group of patients present tumors with refractory chemotherapy, with a dismal prognosis and few effective management options. Although immune checkpoint inhibitors (ICIs) are approved for use in chemotherapy refractory GCT, the evidence supporting this indication remains scarce. Original research studies were included on patients with GCTs refractory to chemotherapy treated with ICI up to December 2023. Comprehensive search strategies databases and MeSH keywords were used to locate eligible literature. Study characteristics, participant demographics, and oncological outcomes were recorded. A total of 13 studies (<i>n</i> = 106) were included, five single-patient case reports, one retrospective cohort, six-phase II randomized controlled trials (RCTs), and an abstract from the preliminary results of a phase II RCT. Most of the studies evaluated did not request biomarkers as inclusion criteria. Median overall response rate across studies was 3.4% (range, 0-57) and 0% (range, 0-6) in retrospective cohort and phase II studies. Progressive disease as the best response was present in most patients, with 75% (range, 0-82.9) in the overall population and 82% (range, 75 -83) in the retrospective cohort and phase II trials. Some of the most durable clinical responses documented in this systematic review corresponded to high tumor mutational burden (TMB-H) or high microsatellite instability (MSI-H)/dMMR tumors. Retrospective cohorts and clinical trials evaluating ICIs for the treatment of chemo-refractory GCTs documented limited activity of these drugs as a single intervention in patients not selected by biomarkers, with a tendency to better results described in those with TMB-H or MSI-H/dMMR tumors.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142885291","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":"Survival Outcomes Following Chemotherapy for High-Grade Central Nervous System Tumors in Adolescents and Young Adults: An Exploration of Variations According to Ethnicity and Deprivation.","authors":"Peter Sciberras, Kirsten Cromie, Anna Radford, Adam Glaser, Richard G Feltbower, Nicola Hughes","doi":"10.1089/jayao.2024.0124","DOIUrl":"https://doi.org/10.1089/jayao.2024.0124","url":null,"abstract":"<p><p><b><i>Introduction:</i></b> Adolescents and young adults (AYA) are a unique subgroup of patients who experience cancer at the interface between pediatric and adult oncology services. Central nervous system (CNS) tumors are the leading cause of cancer-related morbidity and mortality in this group. Socioeconomic status and ethnicity are known to impact CNS tumor survival in patients of all ages. Studies reporting AYA CNS survival outcomes by ethnicity and area-based deprivation, however, are lacking in the United Kingdom (UK). <b><i>Methods:</i></b> Using cancer registration data for 351 patients (12-29 years) who received systemic chemotherapy for a high-grade malignant CNS tumor in England between April 2014 and December 2018, we quantified differences in survival at 1, 2, and 3 years post-diagnosis by ethnicity and area-based socioeconomic status. <b><i>Results:</i></b> Lower survival estimates were seen for non-White ethnicity and lower socioeconomic groups. Three-year survival was 64.4% (95% CI 58.3-69.9) for White patients but 46.6% (95% CI 29.9-61.7) for non-Whites and 64.0% (95% confidence interval [CI] 49.0-75.7) and 62.9% (95% CI 50.7-72.8) in those from the two least deprived fifths compared to 50.2% (95% CI 36.1-62.7) and 56.1% (95% CI 42.4-67.7) in the two most deprived groups. <b><i>Conclusion:</i></b> Our study is the first to show the existence of health disparities in AYA treated with chemotherapy for a primary CNS tumor in England, where patients from ethnic minorities and deprived areas had worse survival rates than their White and socioeconomically advantaged counterparts. These findings call for further research into the underlying reasons behind survival differences between sociodemographic groups to improve survivorship outcomes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2024-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142785498","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":"\"Infertility Isn't a Choice!\": Conversations on Twitter about the Financial Burden of Oncofertility Care.","authors":"Stephanie L Corey, Aya Ari, Maya Sonpatki, Julia H Drizin, Jessica R Gorman","doi":"10.1089/jayao.2024.0035","DOIUrl":"10.1089/jayao.2024.0035","url":null,"abstract":"<p><p>This study aimed to evaluate how the adolescent and young adult (AYA) cancer community utilized Twitter to discuss the financial challenges of oncofertility care and to advocate for change. Tweets related to oncofertility and finances (<i>n</i> = 166), collected over a 12-week time period encompassing AYA Cancer Awareness Week, were thematically analyzed. Conversations highlighted how the high cost of care contributed to already high emotional and social distress. Proposed actions included providing timely information more equitably, improving access to financial support, and continued advocacy of policy changes to improve access to oncofertility care. Future research can explore the potential impact on policy change and clinical care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"876-881"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140911939","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":"Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.","authors":"Patrick Smith, Benjamin Snyder, Maria McDaniel, Madeleine St Ville, Elizabeth Cull, Elizabeth J Siembida, Aniket Saha","doi":"10.1089/jayao.2023.0136","DOIUrl":"10.1089/jayao.2023.0136","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System^®-29 (PROMIS^®-29) within an AYA oncology program clinic. <b><i>Methods:</i></b> AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. <b><i>Results:</i></b> Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. <b><i>Conclusion:</i></b> PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"844-851"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11698662/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498110","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":"\"The Most Important Thing is That You Are Not Left Alone\"-A Qualitative Study of Challenges and Needs of Adolescents and Young Adults with Cancer.","authors":"Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer","doi":"10.1089/jayao.2023.0158","DOIUrl":"10.1089/jayao.2023.0158","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. <b><i>Methods:</i></b> We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of the interview. The interviews were analyzed using content analysis. <b><i>Results:</i></b> The unexpected diagnosis of a serious illness shocked the participants, especially since many were in a life phase of transition at that time and had little knowledge about cancer and its therapy. They reported feelings of helplessness, unfairness, and insecurity triggered by side effects, divergent information from health care professionals (HCPs), or lack of information. After the end of the therapy, many AYAs were challenged by prolonged changes in their lives since they gained strength from the hope of returning to \"the life before.\" The primary needs were social and psychological support, connecting with peers, orientation, and guidance. <b><i>Conclusion:</i></b> AYAs face special challenges requiring support and guidance from HCPs that should extend beyond the end of the therapy. There is a need for exchange opportunities with other AYAs. <b><i>Trial Registration Number:</i></b> DRKS00030277 (German Clinical Trials Register); September 27, 2022.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"859-866"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141070485","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":"Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care.","authors":"Jaya Mallela, Lila Pereira, Emily Simon, Shreya Makkapati, Shannon Forty, Samantha Bruno, Tara Giblin, Jeremy Rosenblum","doi":"10.1089/jayao.2023.0188","DOIUrl":"10.1089/jayao.2023.0188","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Improvements in outcomes for adolescent and young adult (AYA) oncology patients have lagged behind those of other age-specific cancer populations. Research has indicated that low availability of clinical trials, biological differences of this age-group, and several psychosocial factors including higher emotional distress impact outcomes. To improve care and survival rates for these patients, hospitals have implemented AYA oncology programs. The current study evaluated documentation of care in an AYA program housed in an academic medical center based on three areas emphasized in the National Comprehensive Cancer Network's Clinical Practice Guidelines in Oncology for AYAs: clinical trial enrollment, fertility, and psychosocial care. <b><i>Methods:</i></b> Retrospective chart reviews were conducted for 45 patients treated before the start of the AYA oncology program and 45 patients treated after program initiation. Patients aged 15-39 years with a diagnosis of a malignant tumor were included. Variables evaluated included documentation of clinical trial enrollment, fertility preservation and sexual health considerations, and behavioral health referrals. <b><i>Results:</i></b> Documentation of most clinical trial and fertility variables did not significantly improve from pre- to post-program, although a higher number of patients had these variables documented post-program. Behavioral health referrals increased significantly from 52.8% pre-program to 95.4% post-program. <b><i>Conclusion:</i></b> Access to behavioral health care improved the most following implementation of our AYA program, which is likely because of the integration of a dedicated psychologist for AYAs when the program began. The practice of guideline-based care for this population can be better assessed and improved with designated behavioral health providers and more systematic documentation processes.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"852-858"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498109","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":"Systematic Review of the Gonadotoxicity and Risk of Infertility of Soft Tissue Sarcoma Chemotherapies in Pre- and Postpubertal Females and Males.","authors":"Marcel Steinmann, Anita Rietschin, Flavia Pagano, Tanya Karrer, Attila Kollár, Susanna Weidlinger, Michael von Wolff","doi":"10.1089/jayao.2024.0057","DOIUrl":"10.1089/jayao.2024.0057","url":null,"abstract":"<p><p>Increasing awareness of gonadotoxicity in cancer treatments and infertility risk is essential for counseling young cancer patients. While fertility preservation options are available in many countries, limited data on gonadotoxicity hinder recommendations, especially for soft tissue cancers. This review, part of the FertiTOX project (www.fertitox.com), organized by FertiPROTEKT (www.fertiprotekt.com), aims to address this knowledge gap to improve fertility preservation guidance. We performed a systematic literature search on gonadotoxicity in soft tissue sarcoma (STS) cancer treatments. Only patients without metastases or recurrent disease were considered. \"Suspected infertility\" was defined based on low ovarian reserve parameters, low inhibin B levels, high gonadotropin concentration, gonadal dysfunction, amenorrhea, oligomenorrhea, azoospermia, or oligozoospermia due to limited infertility data. The study quality was assessed using the Newcastle-Ottawa Scale. The search yielded 3309 abstracts, with 138 undergoing full-text analysis. Eight studies on STS were included. Suspected infertility was observed in 20 of 28 females (71.4%, range 0-100%) and 38 of 63 males (60.3%, range 34.8-100%) with STS. Six of the eight studies received high-quality scores on the NOS, while two received a fair score. Our data suggest a high risk of infertility from chemotherapy in pre- and postpubertal STS survivors. This underscores the importance of considering fertility preservation measures when counseling these patients.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"803-812"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141599827","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":"Cancer and Fertility: Exploring Uncertainty Management Strategies of Young Adult Female Survivors.","authors":"Annemarie D Jagielo, Alexandra M Davis, Devon Pons, Michael A Diefenbach, Jennifer S Ford, Lidia Schapira, Catherine Benedict","doi":"10.1089/jayao.2024.0015","DOIUrl":"10.1089/jayao.2024.0015","url":null,"abstract":"<p><p>This study describes young adult female (YA-F) cancer survivors' uncertainty management strategies related to fertility/family building. Cross-sectional data were analyzed (<i>n</i> = 98). Participants reported higher rates of seeking information to reduce fertility-related uncertainty (M = 5.48, ±1.03), than avoiding information (M = 4.77, ±1.29). Controlling for relevant covariates (i.e., reproductive distress, household income, and health literacy), greater avoidance was related to higher reproductive distress (β = 0.293, <i>p</i> = 0.011) and lower household income (β = -0.281, <i>p</i> = 0.047). Evidence suggests that some survivors may avoid fertility-related information to manage uncertainty and distress, which may impact family-building success. Fertility avoidance may be an important target of intervention.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"882-887"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11698659/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141432031","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":"Informed Consent and Adolescents with Cancer: Challenges and Tools in Online Studies.","authors":"Maria Carolina Neves, Sara Monteiro, Judith B Prins, Célia M D Sales","doi":"10.1089/jayao.2023.0154","DOIUrl":"10.1089/jayao.2023.0154","url":null,"abstract":"","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"799-802"},"PeriodicalIF":1.2,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141498111","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}