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Transition to Survivorship Care for Adolescents and Young Adults (AYAs) with Acute Leukemia: Provider Perspectives. 过渡到生存护理的青少年和年轻人(AYAs)与急性白血病:提供者的观点。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-01-20 DOI: 10.1089/jayao.2024.0139
Daniella N Flores, Scott Moerdler, Neil Palmisiano, Susan K Parsons, Michael E Roth, Katie A Devine

Purpose: Adolescent and young adult (AYA) survivors of acute lymphoblastic or myeloid leukemia diagnosed between the ages of 15 and 39 years are at risk for adverse late health effects following cancer treatment and require ongoing survivorship care. This study aims to understand the landscape of transitioning AYAs with leukemia from active treatment to survivorship care. Methods: A cross-sectional, anonymous online survey was sent out via listserv/email. Descriptive analyses were used to identify the proportion of providers whose institutions have AYA and/or survivorship programs, current practices in transitioning care, perspective on barriers and facilitators to transition, and preferred models of survivorship care. Differences by provider (i.e., adult medical oncologist vs. pediatric) were analyzed using chi-square or analysis of variance (ANOVA) analyses. Results: A total of 75 provider responses were analyzed; 51.4% of providers reported their institutions had an AYA program and over 80% had a survivorship program. Providers preferred the primary oncology team or survivorship specialist to address most survivorship care needs, except for the treatment of other comorbid conditions (primary care provider [PCP] preferred). Disease-related risks, lack of a PCP, and insurance concerns were commonly endorsed barriers to transition of care. Medical oncologists were more likely than pediatric providers to transition surveillance of new malignancies to PCPs. Conclusions: Providers preferred survivorship specialists to oversee AYA survivorship care, yet several barriers and concerns remain to implement the transition. Results indicate variability in transition care practices and preferences, particularly between medical and pediatric oncologists. Future work is needed to optimize transition practices to improve care for AYA survivors.

目的:年龄在15岁至39岁之间的急性淋巴细胞或髓性白血病的青少年和年轻成人(AYA)幸存者在癌症治疗后存在不良晚期健康影响的风险,需要持续的生存护理。本研究旨在了解从积极治疗到生存护理的白血病AYAs过渡的景观。方法:通过listserv/电子邮件发送横断面匿名在线调查。描述性分析用于确定其机构拥有AYA和/或幸存者计划的提供者比例,过渡护理的当前实践,对过渡障碍和促进因素的看法,以及首选的幸存者护理模式。使用卡方或方差分析(ANOVA)分析不同提供者(即成人肿瘤科医生与儿科医生)的差异。结果:共分析了75份提供者的反馈;51.4%的医疗服务提供者报告说,他们的机构有AYA计划,超过80%的机构有幸存者计划。除了其他合并症的治疗(首选初级保健提供者[PCP])外,提供者更倾向于由初级肿瘤团队或生存专家来解决大多数生存护理需求。疾病相关的风险、缺乏PCP和保险问题通常被认为是转移治疗的障碍。内科肿瘤学家比儿科医生更有可能将新发恶性肿瘤的监测转移到pcp。结论:医疗服务提供者更倾向于选择幸存者专家来监督AYA的幸存者护理,然而实施这种转变仍然存在一些障碍和问题。结果表明,在过渡护理实践和偏好的可变性,特别是在医疗和儿科肿瘤学家之间。未来的工作需要优化过渡实践,以改善对AYA幸存者的护理。
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引用次数: 0
Closing the Gap: The Need for Fertility Intervention for Young Adult Cancer Survivors. 缩小差距:需要生育干预的年轻成年癌症幸存者。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-01-20 DOI: 10.1089/jayao.2024.0126
Peyton R McDuffee, Molin Shi, Alexandra M Dunker, Emily J Smith, Nathan M Overholt, Sarah E Taghavi, Rebecca Eary, Brittany C Hall

The current study identified the fertility-related needs of young adult (YA; ages 19-39) survivors. Participants (n = 94) completed the Adolescent and Young Adult Survivorship Psycho-Oncology Screening Tool-a screening tool developed to assess cancer-related concerns of YAs in survivorship. Approximately one-third of survivors endorsed fertility-related concerns. Frequency of fertility-related concerns was endorsed in descending order: "not knowing fertility status/options," "cost of fertility treatment," "discussing fertility with others," and "grief over fertility." Relationship between fertility concerns and other commonly reported survivorship concerns was identified. Findings highlight a gap in care for fertility-related needs in post-treatment survivorship care for YAs.

目前的研究确定了年轻成人(YA;年龄19-39岁)幸存者。参与者(n = 94)完成了青少年和年轻成人生存心理肿瘤筛查工具,这是一种用于评估青少年生存中癌症相关问题的筛查工具。大约三分之一的幸存者赞同与生育有关的关切。与生育有关的担忧频率按降序排列:“不知道生育状况/选择”、“生育治疗费用”、“与他人讨论生育问题”和“生育悲伤”。确定了生育问题与其他常见的幸存者问题之间的关系。研究结果强调,在治疗后的生存期护理中,对生育相关需求的护理存在差距。
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引用次数: 0
A Content Analysis of #Childhoodcancer Chatter on X. 儿童癌症话题在X上的内容分析
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-26 DOI: 10.1089/jayao.2024.0117
Sherry Pagoto, Cameron Cordaway, Andie Napolitano, Jessica Foy, Cindy Pan, Keith Bellizzi

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 (p < 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.

在美国有超过50万儿童患有癌症。社交媒体平台为公共卫生组织以及卫生保健提供者、科学家、患者和护理人员提供了独特的癌症交流机会。鉴于缺乏关于儿童癌症传播的研究,本研究旨在研究社交媒体平台X(以前的Twitter)上使用#childhoodcancer标签的推文的性质,这些推文吸引最多转发的类型,关于儿童癌症的推文用户类型(例如,个人,医疗保健专业人员),以及不同类型用户所发推文的性质。我们对2022年10月和12月通过NCapture在X上捕获的推文进行了内容分析。在捕获的3217条tweet中,我们随机抽取了1000条符合条件的tweet,并手动对它们进行了双重编码。一致性为83% (κ = 0.75)。结果显示,推文的6个主题分别是:募捐(21.2%)、宣传(20.2%)、激励(17.5%)、教育(15.3%)、科学(12.8%)、呐喊(12.1%)。激励、倡导和科学推文比筹款推文和呐喊吸引了更多的转发(p < 0.001)。个人(即患者、护理人员和代表自己发推文的倡导者)和非营利组织的推文占多数,分别为41.5%和38.6%,其次是医疗保健专业人员(8.7%)、学术和/或医疗中心(4.2%)和营利性公司(3.5%)。X上的儿童癌症交流主要是由个人进行宣传和筹款。X可能为儿童癌症的公共卫生信息和科学传播提供重要机会。
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引用次数: 0
Immune Checkpoint Inhibitors in Patients with Testicular Cancer: A Systematic Review. 免疫检查点抑制剂在睾丸癌患者中的应用:系统综述。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-24 DOI: 10.1089/jayao.2024.0056
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

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 (n = 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.

生殖细胞肿瘤(gct)是治愈率高的化学敏感性肿瘤;然而,一小部分患者的肿瘤采用难治性化疗,预后不佳,且缺乏有效的治疗选择。尽管免疫检查点抑制剂(ICIs)被批准用于化疗难治性GCT,但支持这一适应症的证据仍然很少。原始研究纳入了截至2023年12月对ICI化疗难治的gct患者。使用综合检索策略数据库和MeSH关键词来定位符合条件的文献。记录研究特征、参与者人口统计学和肿瘤预后。共纳入13项研究(n = 106),包括5份单例病例报告、1份回顾性队列、6项II期随机对照试验(RCT)和一份II期RCT初步结果摘要。大多数被评估的研究没有要求生物标志物作为纳入标准。在回顾性队列研究和II期研究中,中位总有效率分别为3.4%(范围0-57)和0%(范围0-6)。大多数患者的最佳反应是进展性疾病,在总体人群中为75%(范围0-82.9),在回顾性队列和II期试验中为82%(范围75 -83)。本系统综述中记录的一些最持久的临床反应对应于高肿瘤突变负荷(TMB-H)或高微卫星不稳定性(MSI-H)/dMMR肿瘤。评估ICIs治疗化疗难治性gct的回顾性队列和临床试验表明,这些药物作为单一干预措施在未被生物标志物选择的患者中活性有限,在TMB-H或MSI-H/dMMR肿瘤患者中有更好的结果。
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引用次数: 0
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. 青少年和年轻人高级别中枢神经系统肿瘤化疗后的生存结果:根据种族和剥夺的变化的探索。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-05 DOI: 10.1089/jayao.2024.0124
Peter Sciberras, Kirsten Cromie, Anna Radford, Adam Glaser, Richard G Feltbower, Nicola Hughes

Introduction: 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). Methods: 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. Results: 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. Conclusion: 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.

青少年和青壮年(AYA)是一个独特的亚组患者谁经历癌症在儿科和成人肿瘤服务之间的接口。中枢神经系统(CNS)肿瘤是本组癌症相关发病率和死亡率的主要原因。已知社会经济地位和种族会影响所有年龄段患者的中枢神经系统肿瘤生存。然而,根据种族和地区剥夺报告AYA中枢神经系统生存结果的研究在英国(UK)缺乏。方法:使用2014年4月至2018年12月期间在英国接受全身化疗的351例(12-29岁)高级别中枢神经系统恶性肿瘤患者的癌症登记数据,我们量化了诊断后1、2和3年生存率的差异,这些差异基于种族和基于地区的社会经济地位。结果:非白种人和社会经济地位较低的群体的生存率较低。白人患者的三年生存率为64.4% (95% CI为58.3-69.9),非白人患者为46.6% (95% CI为29.9-61.7),两个最贫困的五分之二组患者的三年生存率为64.0%(95%可信区间[CI] 49.0-75.7)和62.9% (95% CI为50.7-72.8),而两个最贫困的五分之二组患者的三年生存率为50.2% (95% CI为36.1-62.7)和56.1% (95% CI为42.4-67.7)。结论:我们的研究首次显示了英国原发性中枢神经系统肿瘤的AYA化疗存在健康差异,少数民族和贫困地区的患者比白人和社会经济优势的患者生存率更低。这些发现要求进一步研究社会人口群体之间生存差异背后的潜在原因,以改善生存结果。
{"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}
引用次数: 0
"Infertility Isn't a Choice!": Conversations on Twitter about the Financial Burden of Oncofertility Care. "不孕不育不是选择!":推特上关于肿瘤不孕不育治疗经济负担的对话。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-01 Epub Date: 2024-05-13 DOI: 10.1089/jayao.2024.0035
Stephanie L Corey, Aya Ari, Maya Sonpatki, Julia H Drizin, Jessica R Gorman

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 (n = 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.

本研究旨在评估青少年和年轻成人(AYA)癌症群体如何利用推特来讨论非同性生育护理所面临的财务挑战并倡导变革。在为期 12 周的 "青少年和青年癌症意识周"(AYA Cancer Awareness Week)期间,我们收集了与辅助生育和财务相关的推文(n = 166),并对其进行了主题分析。对话强调了高昂的医疗费用如何加剧了本已很高的情绪和社会压力。建议采取的行动包括更公平地提供及时信息、改善获得经济支持的途径,以及继续倡导政策变革,以改善获得非同步生育护理的途径。未来的研究可以探索政策变化和临床护理的潜在影响。
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引用次数: 0
Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program. 患者报告结果测量信息系统-29 在新成立的青少年肿瘤项目中的可行性和临床实用性。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-01 Epub Date: 2024-07-03 DOI: 10.1089/jayao.2023.0136
Patrick Smith, Benjamin Snyder, Maria McDaniel, Madeleine St Ville, Elizabeth Cull, Elizabeth J Siembida, Aniket Saha

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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.

目的:尽管生存率有所提高,但青少年和年轻成人(AYA)肿瘤患者仍面临着健康相关生活质量(HRQOL)负面结果的高风险。青少年和青年癌症项目已尝试开发评估工具,以确定需求领域。我们的目的是证明患者报告结果测量信息系统®-29 (PROMIS®-29)在亚青肿瘤项目诊所中的可行性/实用性。方法:亚青肿瘤患者由肿瘤专家转诊至 Prisma Health 的亚青肿瘤项目。PROMIS-29 v2.0调查表在就诊时发放给青少年。确定了调查问卷发放的可行性和完成率。PROMIS 调查由患者自我报告,随后采用标准化方法进行评分。评估的领域包括身体功能、焦虑、抑郁、疲劳、睡眠障碍、参与社会角色/活动的能力、疼痛干扰和疼痛强度。此外,还介绍了根据患者和项目层面的调查反馈对亚裔青少年护理服务的定性描述。结果:2017 年 5 月至 2019 年期间,134 名新确诊或正在接受治疗的青壮年完成了调查。PROMIS-29的发放率和完成率均为100%,并且根据PROMIS-29的得分模式对项目层面的服务进行了有意义的调整。在整个队列中,焦虑、疲劳和身体功能的 T 值达到了临床相关的临界值。结论PROMIS 为青少年项目提供了一个可行的机会,以测量对临床有用的青少年 HRQOL 结果。该调查可用于为新近确诊和正在接受治疗的亚裔提供实时的亚裔护理,并对亚裔肿瘤项目进行计划性调整。
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引用次数: 0
"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. "最重要的是你不会孤单"--关于青少年癌症患者的挑战和需求的定性研究。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-01 Epub Date: 2024-05-21 DOI: 10.1089/jayao.2023.0158
Carolin Wilharm, Anne Pralong, Mara Weiß, Saskia Blütgen, Michael Hallek, Raymond Voltz, Steffen T Simon, Armin Tuchscherer

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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. Trial Registration Number: DRKS00030277 (German Clinical Trials Register); September 27, 2022.

目的:我们旨在深入了解青少年癌症患者(AYA)在整个患病期间所面临的挑战和需求,以发现他们对支持的更多需求。方法我们对 15 名确诊为恶性肿瘤时年龄在 18-39 岁之间、在访谈时已完成治疗的患者进行了面对面访谈。我们采用内容分析法对访谈内容进行了分析。结果突如其来的重病诊断令参与者感到震惊,尤其是许多人当时正处于人生转型期,对癌症及其治疗知之甚少。他们表示,副作用、医护人员(HCPs)提供的不同信息或信息匮乏引发了无助感、不公平感和不安全感。治疗结束后,许多青壮年患者因希望回到 "以前的生活 "而获得了力量,但他们的生活却面临着长期变化的挑战。他们的主要需求是社会和心理支持、与同伴的联系、定位和指导。结论青壮年患者面临着特殊的挑战,需要保健医生在治疗结束后提供支持和指导。有必要提供与其他亚健康人群交流的机会。试验注册号:DRKS00030277(德国临床试验注册);2022 年 9 月 27 日。
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引用次数: 0
Communicating Adolescent and Young Adult Oncology Treatment Guidelines in Practice: The Importance of Documentation for Ensuring Positive Impacts on Oncology Care. 在实践中宣传青少年肿瘤治疗指南:文件对确保肿瘤治疗产生积极影响的重要性。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-01 Epub Date: 2024-07-03 DOI: 10.1089/jayao.2023.0188
Jaya Mallela, Lila Pereira, Emily Simon, Shreya Makkapati, Shannon Forty, Samantha Bruno, Tara Giblin, Jeremy Rosenblum

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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.

目的:青少年和年轻成人(AYA)肿瘤患者的治疗效果一直落后于其他特定年龄段的癌症患者。研究表明,临床试验机会少、这一年龄组的生理差异以及包括较高的情绪困扰在内的一些社会心理因素都会影响治疗效果。为了改善对这些患者的护理并提高其存活率,医院实施了青少年肿瘤项目。本研究根据美国国立综合癌症网络(National Comprehensive Cancer Network)的《青少年肿瘤学临床实践指南》(Clinical Practice Guidelines in Oncology for AYAs)中强调的三个方面:临床试验注册、生育和社会心理护理,对一家学术医疗中心的青少年肿瘤项目的护理记录进行了评估。方法:对 45 名在青少年肿瘤项目启动前接受治疗的患者和 45 名在项目启动后接受治疗的患者进行了病历回顾。患者年龄在 15-39 岁之间,诊断为恶性肿瘤。评估的变量包括临床试验注册记录、生育力保护和性健康考虑以及行为健康转诊。结果大多数临床试验和生育变量的记录从计划前到计划后没有明显改善,尽管计划后记录这些变量的患者人数有所增加。行为健康转诊率从计划前的 52.8% 显著增加到计划后的 95.4%。结论:在我们的亚青计划实施后,获得行为健康护理的机会得到了最大程度的改善,这很可能是因为在计划开始时就为亚青纳入了一名专门的心理学家。通过指定的行为健康服务提供者和更系统的记录流程,可以更好地评估和改进针对该人群的基于指南的护理实践。
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引用次数: 0
Systematic Review of the Gonadotoxicity and Risk of Infertility of Soft Tissue Sarcoma Chemotherapies in Pre- and Postpubertal Females and Males. 关于软组织肉瘤化疗对青春期前后女性和男性的性腺毒性和不育风险的系统性综述
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2024-12-01 Epub Date: 2024-07-12 DOI: 10.1089/jayao.2024.0057
Marcel Steinmann, Anita Rietschin, Flavia Pagano, Tanya Karrer, Attila Kollár, Susanna Weidlinger, Michael von Wolff

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.

提高对癌症治疗中的性腺毒性和不育风险的认识对于为年轻癌症患者提供咨询至关重要。虽然许多国家都有保留生育能力的选择,但有关性腺毒性的数据有限,阻碍了相关建议的提出,尤其是针对软组织癌症。本综述是 FertiTOX 项目 (www.fertitox.com) 的一部分,由 FertiPROTEKT (www.fertiprotekt.com) 组织,旨在填补这一知识空白,改善生育力保存指导。我们对软组织肉瘤(STS)癌症治疗中的性腺毒性进行了系统的文献检索。我们只考虑了没有转移或复发的患者。"疑似不孕症 "的定义基于卵巢储备参数低、抑制素 B 水平低、促性腺激素浓度高、性腺功能障碍、闭经、少经、无精或少精,因为不孕症数据有限。研究质量采用纽卡斯尔-渥太华量表进行评估。检索共获得 3309 篇摘要,其中 138 篇进行了全文分析。其中包括 8 项关于 STS 的研究。在 28 位 STS 患者中,有 20 位女性(71.4%,范围 0-100%)和 63 位男性中的 38 位(60.3%,范围 34.8-100%)疑似不孕。八项研究中有六项获得了 NOS 的高质量评分,两项获得了一般评分。我们的数据表明,在青春期前和青春期后的 STS 幸存者中,化疗导致不育的风险很高。这强调了在为这些患者提供咨询时考虑生育力保护措施的重要性。
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引用次数: 0
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Journal of adolescent and young adult oncology
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