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Systematic Review of Health Insurance and Survival among Adolescent and Young Adult Cancer Patients. 健康保险和青少年癌症患者生存的系统评价。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-06 DOI: 10.1177/21565333261417655
Tara Martin, Rhonda Winegar, Zhaoli Liu

Cancer is the leading cause of disease-related death among female adolescents and young adults (AYAs) and the second leading cause after heart disease among males in the United States. Despite recent improvements in survival outcomes, AYAs continue to experience poorer cancer survival rates compared with pediatric and older adult populations. Health care access and quality are substantially influenced by insurance coverage, and AYAs represent the age group with the highest proportion of uninsured individuals. The objective of this review was to examine the association between insurance status and cancer survival among AYAs to inform future policy interventions. Following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, peer-reviewed studies published in the United States between 2018 and 2024 were identified from PubMed, CINAHL, and Web of Science. Eligible studies examined associations between insurance status and survival outcomes among the AYA cancer population. Ten studies, encompassing 468,583 AYAs with cancer (60.1% female), were included. Individuals with Medicaid/public insurance, as well as those uninsured, exhibited poorer survival outcomes compared with those privately insured across multiple cancer types, including head and neck cancer, lymphoma, central nervous system tumors, hepatic carcinomas, sarcoma, germ cell, breast, thyroid, cervical, colorectal, uterine, ovarian, kidney, lung, and melanoma. Several associations appeared to be age-dependent (e.g., lymphoma). Findings from this review suggest that insurance status is associated with both short- and long-term cancer outcomes among AYAs. The results also highlight persistent challenges in accurately assessing and categorizing insurance status within this population.

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引用次数: 0
Work Ability in Young Adult Survivors (WAYS WF-10217): Documenting Labor Force Participation, Occupation, and Educational Attainment Following Cancer Treatment. 年轻成年幸存者的工作能力(WAYS WF-10217):记录癌症治疗后的劳动力参与、职业和教育程度。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-03 DOI: 10.1177/21565333261418478
Karly M Ingram, Janet A Tooze, Sharon M Castellino, Katherine A McLean, John M Salsman, Lauren V Ghazal, Heather Miller, James Lloyd Wade, Robert J Behrens, Joanne C Sandberg, Carla Strom, Thomas A Arcury, Glenn J Lesser, Suzanne C Danhauer

Purpose: Work ability and work-related outcomes (labor force participation, occupation, and educational attainment) are important for young adult-aged survivors of adolescent and young adult cancer (YAs). This study evaluates work-related outcomes and explores the role of workplace accommodations among YAs aged 25-34 years.

Methods: For this cross-sectional study, YAs (N = 209) completed measures of educational attainment, labor force participation, occupation, work ability, and workplace accommodations. Work ability was assessed using the Work Ability Index and Work Limitations Questionnaire productivity loss index. We compared work-related outcomes with national benchmarks; analysis of variance models examined associations among work ability, work-related outcomes, and workplace accommodations.

Results: Participant education and employment were greater than national benchmarks. Among employed cancer survivors (N = 176), individuals with less education reported lower work ability (F = 3.99, p = 0.004) and greater productivity loss (F = 4.21, p = 0.003) than those with higher levels of education. Workplace accommodations were a significant predictor of work ability; those with accommodations reported lower work ability (F = 3.99, p = 0.004) and greater productivity loss (F = 4.21, p = 0.003).

Conclusions: While YAs in this sample generally demonstrated higher employment and educational attainment rates than the national average, those with lower educational levels face greater challenges in work ability. Workplace accommodations may only be provided to individuals experiencing the greatest deficits in work ability and productivity. This study highlights the need for additional data regarding workplace accommodations to enhance work ability and mitigate productivity loss among YAs.

目的:工作能力和与工作相关的结果(劳动力参与、职业和教育程度)对青少年和青年癌症(YAs)的年轻成年幸存者很重要。本研究评估了与工作相关的结果,并探讨了工作场所住宿在25-34岁青少年中的作用。方法:在这个横断面研究中,有209名志愿者完成了教育程度、劳动力参与、职业、工作能力和工作场所住宿的测量。工作能力评估采用工作能力指数和工作限制问卷生产力损失指数。我们将工作相关的结果与国家基准进行了比较;方差模型分析检验了工作能力、工作相关结果和工作场所住宿之间的关联。结果:参与教育和就业均高于国家基准。在有工作的癌症幸存者(N = 176)中,受教育程度较低的人比受教育程度较高的人工作能力较低(F = 3.99, p = 0.004),生产力损失较大(F = 4.21, p = 0.003)。工作场所住宿是工作能力的显著预测因子;有住宿的员工工作能力较差(F = 3.99, p = 0.004),生产力损失较大(F = 4.21, p = 0.003)。结论:虽然本样本中青少年的就业率和受教育程度普遍高于全国平均水平,但受教育程度较低的青少年在工作能力方面面临更大的挑战。工作场所的住宿只能提供给在工作能力和生产力方面存在最大缺陷的个人。这项研究强调了需要更多关于工作场所住宿的数据,以提高工作能力和减轻YAs的生产力损失。
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引用次数: 0
Barriers to Care and Opportunities for Improvement: Adolescents and Young Adults with Cancer in Central America, Mexico, the Caribbean, and Peru. 治疗障碍和改善机会:中美洲、墨西哥、加勒比和秘鲁的青少年和青年癌症患者。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-03 DOI: 10.1177/21565333261417885
Elysia M Alvarez, Renata Abrahão, Samantha Wong, Emily Johnston, Crystal Romero, Wendy Gómez García, Daniel Ortiz Morales, Federico Antillon-Klussmann, Soad Fuentes-Alabi, Ligia Fu, Ligia Rios, Karina Quintero Delgado, Pascale Yola Heurtelou Gassant, Melissa Gosdin, Marcio Malogolowkin, Paola Friedrich

Background: Little is known about the barriers to care and resources needed for adolescents and young adults (AYAs, 15-39) with cancer in low- and middle-income countries, where most of these patients live. We aimed to address this gap through interviews with pediatric and adult hematologists/oncologists.

Methods: We enrolled physicians from nine countries in Central America, Mexico, the Caribbean, and Peru. Semistructured interviews were conducted in Spanish, recorded, transcribed, and translated into English.

Results: Twenty-eight respondents provided over 26 hours of data, and 46% were adult hematologists/oncologists. We identified multiple barriers in caring for AYA patients, including clinical, psychosocial, financial, and educational barriers. These include a lack of a multidisciplinary team focused on AYA patients, mental health support, a dedicated space for this patient population, high treatment costs, travel distance to the hospital, and discontinuity of care due to age limits. In addition, there are competing demands for resources with adult oncology, delays in diagnosis, and patients' abandonment of treatment. Potential opportunities for improvement included having multidisciplinary AYA oncology teams, standardized treatment protocols, AYA-specific cancer registry, dedicated space, mental health support (e.g., support groups), improving access to health insurance, patient and physician education, and vocational assistance.

Conclusions: This study identifies substantial barriers to the care of AYA patients with cancer in Central America, Mexico, the Caribbean, and Peru. It also highlights key areas for potential intervention to improve outcomes in this population. These key findings can guide cancer control programs in Latin America as they begin to include AYAs.

背景:在低收入和中等收入国家,大多数癌症患者生活在青少年和年轻成人(年龄15-39岁)中,人们对癌症治疗的障碍和所需资源知之甚少。我们旨在通过与儿科和成人血液学家/肿瘤学家的访谈来解决这一差距。方法:我们招募了来自中美洲、墨西哥、加勒比海和秘鲁九个国家的医生。半结构化访谈用西班牙语进行,录音、转录并翻译成英语。结果:28名受访者提供了超过26小时的数据,其中46%是成年血液学家/肿瘤学家。我们确定了照顾AYA患者的多重障碍,包括临床、社会心理、经济和教育障碍。这些因素包括缺乏专注于AYA患者的多学科团队、心理健康支持、这类患者的专用空间、高昂的治疗费用、到医院的距离以及由于年龄限制而导致的护理不连续性。此外,还有与成人肿瘤学、诊断延误和患者放弃治疗的资源竞争需求。潜在的改进机会包括建立多学科的美国儿科学会肿瘤学小组、标准化的治疗方案、美国儿科学会特定的癌症登记处、专用空间、心理健康支助(例如支助小组)、改善获得医疗保险、患者和医生教育以及职业援助的机会。结论:本研究确定了中美洲、墨西哥、加勒比地区和秘鲁对AYA癌症患者的护理存在实质性障碍。它还强调了潜在干预的关键领域,以改善这一人群的预后。这些关键发现可以指导拉丁美洲的癌症控制项目,因为它们开始包括aya。
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引用次数: 0
Air Pollution and Cardiovascular Risks in Testicular Cancer Survivors: An Exploratory Case-Crossover Study. 睾丸癌幸存者的空气污染与心血管风险:一项探索性病例交叉研究。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2024.0144
Judy Y Ou, Joemy M Ramsay, Heydon K Kaddas, James A VanDerslice, Brock O'Neil, Sarah M García, Benjamin D Horne, Heidi Hanson, Anne C Kirchhoff

Objectives: Testicular cancer survivors can experience cardiovascular and respiratory complications due to cancer treatment. We assessed associations between nitrogen dioxide (NO2) and ozone (O3) air pollution and health care encounters among survivors of adolescent and young adult (AYA) testicular cancer.

Methods: A total of 385 AYA testicular cancer survivors, diagnosed 2000-2016, with cardiovascular and/or respiratory health care encounters (emergency department/urgent care [ED/UC], inpatient) were identified using a statewide Utah-based resource. Continuous and dichotomous (≥moderate air quality index) exposure measures were included for NO2 and O3 for the 1-4 days (lag days) before events. A case-crossover framework using conditional logistic regression with robust standard errors computed the association of lag days 0-3 with cardiovascular or respiratory encounters and stratified by encounter type (ED/UC, inpatient). Models that were significant in the full cohort were also stratified on demographic and treatment factors. All models were controlled for temperature and humidity.

Results: Survivors contributed 257 cardiovascular and 685 respiratory encounters. NO2 ≥moderate on lag day 1 was associated with increased odds of any cardiovascular encounter (odds ratio [OR] = 1.97, 95% confidence interval [CI] = 1.08-3.59) and inpatient cardiovascular encounters in the full cohort (OR = 2.48, 95% CI = 1.21-5.10), survivors treated with radical orchiectomy and chemotherapy (OR = 3.00, 95% CI = 1.29-7.00), and Hispanic survivors (OR = 4.32, 95% CI = 1.18-15.85). O3 ≥moderate on lag day 4 was associated with respiratory ED/UC encounters (OR = 1.34, 95% CI = 1.00-1.79) and O3 on lag day 4 was associated with any cardiovascular encounter (OR = 1.02/parts per billion [ppb], 95% CI = 1.00-1.03) and inpatient cardiovascular encounters (OR = 1.03/ppb, 95% CI + 1.00-1.05).

Conclusions: NO2 and O3 are associated with risk for health care encounters among testicular cancer survivors and could increase health disparities in survivorship.

目的:睾丸癌幸存者可能会因癌症治疗而出现心血管和呼吸系统并发症。我们评估了青少年和青年睾丸癌(AYA)幸存者中二氧化氮(NO2)和臭氧(O3)空气污染与医疗保健遭遇之间的关系。方法:使用犹他州全州范围内的资源,共收集385例AYA睾丸癌幸存者,诊断为2000-2016年,心血管和/或呼吸保健就诊(急诊科/紧急护理[ED/UC],住院患者)。事件发生前1-4天(滞后日)的NO2和O3连续暴露和二分暴露(空气质量指数≥中等)。使用具有稳健标准误差的条件逻辑回归的病例交叉框架计算了滞后天数0-3与心血管或呼吸系统遭遇的关联,并按遭遇类型(ED/UC,住院患者)分层。在整个队列中具有重要意义的模型也根据人口统计学和治疗因素进行分层。所有模型都控制了温度和湿度。结果:幸存者有257例心血管疾病和685例呼吸疾病。延迟第1天NO2≥中度与全队列中任何心血管遭遇(优势比[OR] = 1.97, 95%可信区间[CI] = 1.08-3.59)、住院心血管遭遇(OR = 2.48, 95% CI = 1.21-5.10)、接受根治性睾丸切除术和化疗的幸存者(OR = 3.00, 95% CI = 1.29-7.00)和西班牙裔幸存者(OR = 4.32, 95% CI = 1.18-15.85)的几率增加相关。延迟第4天O3≥中度与呼吸性ED/UC相关(OR = 1.34, 95% CI = 1.00-1.79),延迟第4天O3与任何心血管疾病相关(OR = 1.02/ ppb, 95% CI = 1.00-1.03)和住院心血管疾病相关(OR = 1.03/ppb, 95% CI + 1.00-1.05)。结论:NO2和O3与睾丸癌幸存者的医疗风险相关,并可能增加幸存者的健康差异。
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引用次数: 0
Weight-Related Outcomes Among Survivors of Adolescent and Young Adult Cancer after Anti-Obesity Medication Initiation. 青少年和青年癌症幸存者在开始抗肥胖药物治疗后的体重相关结局
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0031
Amy M Berkman, Clark R Andersen, Stephanie B Dixon, Amanda Ramirez, Katherine Gilmore, Whittney Thoman, Zayd A Razouki, David Santos, Sonali Thosani, J A Livingston, Michelle A T Hildebrandt, Michael E Roth

Anti-obesity medications (AOMs) have not been studied in survivors of adolescent and young adult (AYA) cancer. In this retrospective analysis, generalized additive mixed model with penalized spline described body mass index (BMI) over time among survivors of AYA cancer prescribed an AOM. Body weight and BMI at pre-AOM maximum and last follow-up were summarized, with 95% confidence intervals. Over a median follow-up time of 249 days, 63.4% of survivors had ≥5% weight reduction. The proportion of survivors with severe obesity decreased from 60% to 35%. These findings suggest that AOMs are effective for weight reduction in survivors of AYA cancer.

抗肥胖药物(AOMs)尚未在青少年和年轻成人(AYA)癌症幸存者中进行研究。在这项回顾性分析中,惩罚样条的广义加性混合模型描述了AYA癌症幸存者的身体质量指数(BMI)随时间的变化。总结aom前最大和最后一次随访时的体重和BMI,置信区间为95%。在中位随访249天期间,63.4%的幸存者体重减轻≥5%。严重肥胖的幸存者比例从60%下降到35%。这些发现表明,AOMs对AYA癌症幸存者的体重减轻有效。
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引用次数: 0
Quality of Life Among Adolescents and Young Adults with Melanoma: A Systematic Review. 青少年和青年黑色素瘤患者的生活质量:一项系统综述。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0029
Nabeel Ahmad, Alisha Kashyap, Madison Taylor, Nadeen Gonna, Priscilla Haff, David Farris, Jennifer McQuade, Michael Roth, Kelly Nelson

While quality of life (QoL) has been well-studied in older adults with melanoma, it has received less attention in adolescents and young adults (AYAs). Understanding QoL trajectories in AYAs with melanoma can help identify care gaps and develop interventions to support patients through cancer treatment and survivorship. A systematic review of MEDLINE, Embase, Cochrane, and Web of Science identified 4283 unique articles. Clinical trials, cohort studies, cross-sectional studies, and qualitative studies were included if the study cohort addressed any aspect of QoL in AYA patients (ages 15-39) with cutaneous, ocular, or mucosal melanoma. Out of 128 full-text articles, 9 met inclusion criteria, representing 1516 AYAs with melanoma. Psychological health was the most reported QoL domain, followed by social health and relationships. Compared with AYAs with other cancers, patients with melanoma, were more likely to experience distress related to body image, fear of cancer recurrence, and higher levels of depression, anxiety, and sexual problems. Eighty-two studies did not stratify QoL outcomes by age, and eight studies included AYA patients with multiple types of cancer, but did not stratify QoL outcomes by cancer type, thus, the AYA patients could not be identified within the larger QoL data pool and excluding at least 374 patients. Gaps remain in our understanding of these challenges, emphasizing the need for additional research investigating distress in this population. Developing a standard QoL battery and stratifying QoL outcomes by age and cancer type are two potential opportunities to improve future QoL outcomes research for this population.

虽然生活质量(QoL)已经在老年黑色素瘤患者中得到了很好的研究,但它在青少年和年轻人(AYAs)中得到的关注较少。了解患有黑色素瘤的aya患者的生活质量轨迹可以帮助确定护理差距,并制定干预措施,以支持患者进行癌症治疗和生存。对MEDLINE、Embase、Cochrane和Web of Science的系统综述发现了4283篇独特的文章。临床试验、队列研究、横断面研究和定性研究,如果研究队列涉及皮肤、眼部或粘膜黑色素瘤AYA患者(15-39岁)生活质量的任何方面。在128篇全文文章中,9篇符合纳入标准,代表1516例黑色素瘤aya患者。心理健康是报告最多的生活质量领域,其次是社会健康和人际关系。与患有其他癌症的aya相比,黑色素瘤患者更有可能经历与身体形象相关的痛苦,害怕癌症复发,以及更高水平的抑郁、焦虑和性问题。82项研究未按年龄对生活质量结果进行分层,8项研究纳入了多种癌症类型的AYA患者,但未按癌症类型对生活质量结果进行分层,因此,无法在更大的生活质量数据池中识别AYA患者,并排除了至少374例患者。我们对这些挑战的理解仍然存在差距,强调需要对这一人群的痛苦进行进一步的研究。开发一个标准的生活质量电池和按年龄和癌症类型对生活质量结果进行分层是改善这一人群未来生活质量结果研究的两个潜在机会。
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引用次数: 0
Barriers and Enablers to Accessing a Young Adult Peer Support Group for Proton Beam Therapy Patients. 质子束治疗患者进入青年同伴支持小组的障碍和促进因素。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0016
Karthica Santhagunanathan, Mark Ngo

There is consensus among health care professionals that the needs of young adults (YAs) are poorly met. A service evaluation was performed, using semi-structured interviews to explore how YAs (n = 9) perceive peer support. Findings highlighted the importance of peer support in enhancing the patient experience by fostering meaningful connections and offering opportunities to serve as positive role models to others. Many YAs feel disconnected from their friends, making peer support a valuable source of normality. Participants expressed a preference for weekly 45-60-minute sessions and highlighted the importance of effective promotion and relevant discussion topics to encourage engagement.

卫生保健专业人员一致认为,年轻人的需求没有得到很好的满足。使用半结构化访谈进行服务评估,以探索青少年(n = 9)如何感知同伴支持。研究结果强调了同伴支持的重要性,通过培养有意义的联系和提供机会为他人提供积极的榜样,来增强患者的体验。许多青少年觉得自己与朋友脱节,这使得同伴的支持成为正常生活的宝贵来源。与会者表示倾向于每周45-60分钟的会议,并强调了有效宣传和相关讨论主题的重要性,以鼓励参与。
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引用次数: 0
Association of Guideline-Concordant Care with Survival in Adolescent and Young Adult Patients with Germ Cell Tumors. 青少年和青年生殖细胞肿瘤患者指南一致性护理与生存的关系。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0004
Elysia Alvarez, Marcio Malogolowkin, A Lindsay Frazier, Qian Li, Ann Brunson, Fran Maguire, Renata Abrahao, Mamta Parikh, Hui Chen, Theresa H M Keegan

Purpose: Treatment for germ cell tumors (GCTs) in adolescent and young adults (AYA: 15-39) spans different primary sites and multiple specialties. Little is known about the treatment patterns outside of clinical trials, including the delivery of guideline-concordant care.

Methods: This is a population-based, retrospective cohort study of AYAs diagnosed (2004-2018) with GCT. Guideline-concordant care was determined using treatment text-field data from the California Cancer Registry. Survival models measured the impact of guideline-concordant care as a time-dependent variable on overall survival accounting for known prognostic factors. GCTs were analyzed separately by primary site (extragonadal, ovarian, and testicular).

Results: The majority of patients had testicular GCT (90.4%), early-stage disease (stage I/II: 75.3%), and received part/no treatment at a specialized cancer center (SCC) (77.5%). For treatment, 37.6% of patients received surgery plus chemotherapy, followed by surgery alone (36.2%). The most common chemotherapy regimen was bleomycin, etoposide, and cisplatin. Sixty-four percent of patients received guideline-concordant care, with variations by primary site (extragonadal 54.7%, ovarian 70.1%, and testicular 64.6%). Receipt of guideline-concordant care was associated with superior survival for testicular primaries (hazard ratio = 0.56, confidence interval: 0.45-0.69). Patients with testicular primaries who had no treatment at an SCC were less likely to receive guideline-concordant care.

Conclusion: This study identified that receipt of guideline-concordant care was associated with improved survival; however, a substantial proportion of AYA patients do not receive this care, highlighting the need to investigate the barriers to the delivery of guideline-concordant care in this patient population.

目的:生殖细胞肿瘤(gct)在青少年和年轻人(AYA: 15-39)的治疗跨越不同的原发部位和多个专业。对于临床试验之外的治疗模式,包括指南一致性护理的提供,人们知之甚少。方法:这是一项基于人群的回顾性队列研究,研究对象为诊断为GCT的aya(2004-2018)。使用来自加州癌症登记处的治疗文本字段数据确定指南-一致性护理。生存模型测量了指南一致性护理的影响,作为考虑已知预后因素的总生存的时间依赖变量。gct按原发部位(角外、卵巢和睾丸)分别分析。结果:大多数患者患有睾丸GCT(90.4%),早期疾病(I/II期:75.3%),在专门的癌症中心(SCC)接受部分或未接受治疗(77.5%)。在治疗方面,37.6%的患者接受手术加化疗,其次是单独手术(36.2%)。最常见的化疗方案是博来霉素、依托泊苷和顺铂。64%的患者接受了与指南一致的护理,因原发部位而异(睾丸外54.7%,卵巢70.1%,睾丸64.6%)。接受符合指南的护理与睾丸原发患者较高的生存率相关(风险比= 0.56,可信区间:0.45-0.69)。未在SCC接受治疗的睾丸原发患者接受指南一致治疗的可能性较小。结论:本研究确定接受指南-一致性护理与生存率提高相关;然而,相当大比例的AYA患者没有接受这种治疗,这突出表明有必要调查在这一患者群体中提供指南一致性治疗的障碍。
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引用次数: 0
A Community-Led Approach to Addressing Health Disparities Among Adolescent and Young Adult Cancer Survivors. 解决青少年和青年癌症幸存者健康差异的社区主导方法。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0008
Lauren V Ghazal, Alison Silberman, Ruzette Solis, Julye M Williams, Alexandra M Davis, Jacqueline E Shanley, Lauren Martino, Catherine Benedict, Bridgette Thom

Purpose: Adolescent and young adult (AYA) cancer survivors (i.e., those diagnosed between the ages of 15 and 39 years) experience significant health and health care disparities. Formal evaluation of the role of community-based organizations in addressing these disparities is limited. Through a novel Health Equity Initiative, which included a series of community-driven conversations), Stupid Cancer, an AYA-focused cancer patient advocacy organization, sought to better understand the perceived impact of racism, homophobia, transphobia, and ableism on supportive cancer care among AYAs.

Methods: This paper describes how Stupid Cancer developed and implemented its Health Equity Initiative programming (2021-2023) and presents findings from this program. Community-driven conversations comprised of several virtual focus groups, working groups, and town halls conducted via Zoom over the two years. We performed thematic analysis of transcripts from community-driven conversations.

Results: Three themes were identified from community-driven conversations across initiative events 1) perception, 2) transition, and 3) representation. Based on these findings and further community discussions, four solutions were codeveloped with community members, which serve as proposed mechanisms for addressing identified health care inequities among AYA cancer survivors.

Conclusion: Inclusivity and representation are vital components of AYA cancer care delivery. More research and quality improvement initiatives are needed to identify community-level interventions to mitigate health care disparities, ensuring all AYAs receive access to high-quality cancer care.

目的:青少年和年轻成人(AYA)癌症幸存者(即那些被诊断年龄在15至39岁之间的人)经历了重大的健康和保健差异。对社区组织在处理这些差异方面的作用的正式评价是有限的。通过一项新颖的健康平等倡议(其中包括一系列社区驱动的对话),愚蠢的癌症,一个专注于AYAs的癌症患者倡导组织,试图更好地理解种族主义、同性恋恐惧症、变性恐惧症和残疾歧视对AYAs的支持性癌症治疗的影响。方法:本文描述了愚蠢癌症如何制定和实施其健康公平倡议计划(2021-2023),并介绍了该计划的研究结果。社区驱动的对话由几个虚拟焦点小组、工作组和市政厅组成,通过Zoom进行了两年。我们对社区驱动的对话文本进行了专题分析。结果:从主动性事件的社区驱动对话中确定了三个主题:1)感知,2)过渡,3)表现。根据这些发现和进一步的社区讨论,与社区成员共同制定了四种解决方案,作为解决AYA癌症幸存者中确定的卫生保健不公平问题的拟议机制。结论:包容性和代表性是AYA癌症治疗提供的重要组成部分。需要更多的研究和质量改进举措,以确定社区一级的干预措施,以减轻保健差距,确保所有aya都能获得高质量的癌症护理。
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引用次数: 0
Financial and Legal Burdens and Discrimination after Surviving a Childhood Cancer Diagnosis in Germany-Results from a Survey in the German Childhood Cancer Survivor Community. 德国儿童癌症诊断存活后的经济和法律负担和歧视——来自德国儿童癌症幸存者社区的一项调查结果。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-02-01 Epub Date: 2026-02-03 DOI: 10.1089/jayao.2025.0026
Bjoern Hessing, Jette Luedersen, Lisa Scharping, Astrid Zehbe, Jennifer Gotta, Marie Alfes, Eva-Maria Wild

Purpose: Since survival rates have improved over recent decades, there is an increasing number of childhood cancer survivors. Besides the late medical effects of the therapy, survivors experience financial and legal burdens and discrimination linked to their cancer history. The objective of this study was to examine the prevalence and types of discrimination faced by childhood cancer survivors in Germany.

Methods: We conducted a survey in the German childhood cancer community assessing domains of discrimination.

Results: Within 111 participants, recruited through social media campaigns and direct outreach to organizations in the field of pediatric oncology, 76.6% (n = 85) reported experiencing at least one form of discrimination. The most common areas of discrimination involved various types of insurance coverage (51.4%), employment (27.9%), and educational matters (16.2%).

Conclusion: Our findings highlight the significant prevalence of lifelong financial and legal burdens and discrimination among childhood cancer survivors. It reveals the urgent need for education, awareness campaigns regarding cancer survival, and legal measures to end discrimination and to establish equal treatment in terms of social and financial issues. Our results contribute to the ongoing discussion surrounding the law named "Right to be Forgotten" and advocate an implementation in Germany.

目的:由于近几十年来生存率有所提高,儿童癌症幸存者的数量越来越多。除了治疗的后期医疗影响外,幸存者还经历了与癌症病史相关的经济和法律负担以及歧视。本研究的目的是调查德国儿童癌症幸存者所面临的歧视的流行程度和类型。方法:我们在德国儿童癌症社区进行了一项调查,评估歧视领域。结果:在111名参与者中,通过社交媒体活动和直接接触儿科肿瘤学领域的组织招募,76.6% (n = 85)报告至少经历过一种形式的歧视。最常见的歧视领域涉及各类保险(51.4%)、就业(27.9%)和教育事务(16.2%)。结论:我们的研究结果突出了儿童癌症幸存者终身经济和法律负担和歧视的显著普遍性。报告显示,迫切需要开展关于癌症生存的教育和宣传活动,并采取法律措施,以结束歧视,并在社会和财政问题方面建立平等待遇。我们的研究结果有助于围绕“被遗忘权”法律的持续讨论,并主张在德国实施。
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Journal of adolescent and young adult oncology
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