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Adult Survivors of Childhood Cancer Unmet Needs: A Quality Improvement Brief Report. 儿童癌症未满足需求的成年幸存者:质量改进简要报告。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-23 DOI: 10.1177/21565333251407898
Dori M Beeler, Susan Yaguda, Jennifer Pope

Childhood cancer survivors (CCS) who completed treatment and are disease-free face long-term care transition challenges. This quality improvement (QI) study explored CCS needs and captured feedback for the Adult Survivors of Childhood Cancer Clinic (ASCC) program development. Participants were predominantly White and female; ages ranged from 1 to 17 years at diagnosis and 18 to 34 years at the time of the study. Surveys (n = 47) and interviews (n = 5) focused on the voice of the ASCC patient. REDCap facilitated descriptive survey analysis, while the rapid analysis of interviews identified high-level themes aligned with the survey findings. Nutrition and mental health needs were ranked equally as the top needs, and rapid interview analysis identified noteworthy gender-specific trends. Integrating the patient perspective helps ensure clinic programming is tailored to the patients it serves.

完成治疗并无病的儿童癌症幸存者(CCS)面临着长期护理过渡的挑战。这项质量改进(QI)研究探讨了儿童癌症成年幸存者诊所(ASCC)项目开发的CCS需求和反馈。参与者主要是白人和女性;诊断时的年龄为1至17岁,研究时的年龄为18至34岁。调查(n = 47)和访谈(n = 5)主要关注ASCC患者的声音。REDCap促进了描述性调查分析,而对访谈的快速分析则确定了与调查结果一致的高层主题。营养和心理健康需求同样被列为最重要的需求,快速访谈分析确定了值得注意的针对性别的趋势。整合病人的观点有助于确保诊所的规划是为它所服务的病人量身定制的。
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引用次数: 0
Pain Predicts Next-Day Fatigue in Adolescents and Young Adults Receiving Maintenance Treatment for Acute Lymphoblastic Leukemia. 在接受急性淋巴细胞白血病维持治疗的青少年和年轻人中,疼痛预示着第二天的疲劳。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-22 DOI: 10.1177/21565333251406895
Kimberly L Klages, Ahna L H Pai, Alexandra M Psihogios

Objective: Fatigue is a prevalent and debilitating problem in adolescents and young adults (AYAs) with cancer. AYAs with acute lymphoblastic leukemia (ALL) are at particular risk for fatigue. Other factors, such as pain, nausea, and negative mood, have also been identified as contributors to cancer-related fatigue in cross-sectional studies. Because these states rapidly fluctuate, they may also serve as important time-varying predictors of fatigue. The purpose of this study was to determine whether current pain, nausea, and negative mood predict subsequent fatigue in AYAs during maintenance therapy and whether these relationships are moderated by sociodemographic factors. Methods: Eighteen AYAs (Mage = 17.90) completed a baseline demographic questionnaire and once-daily diaries to assess current fatigue, pain, nausea, and negative mood over a 28-day period during maintenance treatment. Dynamic structural equation modeling was used to examine whether pain, nausea, or negative mood predicts next-day fatigue, and if specific demographic variables, age, biological sex, race, ethnicity, and insurance status (public vs. private) moderated these relationships. Results: Pain significantly predicted next-day fatigue in AYAs (Est. = 0.35, p < 0.001), and age was the only significant moderator of this relationship (Est. = -0.13, p < 0.001). Nausea and negative mood did not significantly predict next-day fatigue. Conclusions: Pain positively predicted next-day fatigue, and the effect of pain as a predictor of fatigue was found to decrease with age. Routine pain assessments that trigger timely, in-the-moment interventions may help alleviate current pain and reduce near-term fatigue in AYAs with ALL during maintenance treatment, especially among younger adolescents.

目的:疲劳是青少年和年轻成人(AYAs)癌症患者普遍存在的衰弱问题。患有急性淋巴细胞白血病(ALL)的aya特别容易出现疲劳。在横断面研究中,其他因素,如疼痛、恶心和消极情绪,也被确定为导致癌症相关疲劳的因素。由于这些状态波动迅速,它们也可以作为疲劳的重要时变预测因子。本研究的目的是确定当前的疼痛、恶心和负面情绪是否可以预测维持治疗期间aya患者随后的疲劳,以及这些关系是否受到社会人口因素的调节。方法:18名asa(年龄17.90)完成了基线人口调查问卷和每日一次的日记,以评估维持治疗期间28天内的当前疲劳、疼痛、恶心和负面情绪。动态结构方程模型用于检验疼痛、恶心或消极情绪是否预测第二天的疲劳,以及特定的人口统计学变量、年龄、生理性别、种族、民族和保险状况(公共与私人)是否调节了这些关系。结果:疼痛显著预测aya患者第二天的疲劳(Est. = 0.35, p < 0.001),年龄是唯一显著调节这种关系的因素(Est. = -0.13, p < 0.001)。恶心和消极情绪对第二天的疲劳无显著影响。结论:疼痛积极预测第二天的疲劳,并且疼痛作为疲劳的预测因子的作用随着年龄的增长而减弱。常规疼痛评估触发及时的、即时的干预可能有助于缓解急性淋巴细胞白血病患者在维持治疗期间的当前疼痛和减少近期疲劳,特别是在年轻的青少年中。
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引用次数: 0
Developing a Tool to Assess Needs of AYA Cancer Survivors in Rural, Medically Underserved Regions of Southwestern Indiana. 开发一种工具来评估印第安纳州西南部农村医疗服务不足地区AYA癌症幸存者的需求。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-09 DOI: 10.1177/21565333251405138
Brittany J Ritzman, Joseph Sakel, Ryan Heumann, Oseme Okoruwa, Bridget Hawryluk, Courtney Moore, Lisa Parks, Brandon Cockrum, Dustin Lynch, Andrea Kiser, Sarah Wiehe, Kara Garcia, Tammy Sajdyk

While cancer has sustained impacts on survivors, no unified strategy exists to assess the ongoing needs of survivors. Adolescent and young adult (AYA) cancer survivors have unique needs and concerns related to their life stages, including education, career, relationships, and family planning, all of which may be impacted by cancer and its treatments. In this study, we co-designed with survivors a distributable digital tool for assessing needs among this population. Because of known disparities in outcomes for survivors in rural or medically underserved areas, initial tool development focused on feedback from AYA survivors in one such region (Southwest Indiana).

虽然癌症对幸存者有持续的影响,但没有统一的战略来评估幸存者的持续需求。青少年和年轻人(AYA)癌症幸存者有与他们的生命阶段相关的独特需求和关注,包括教育,职业,关系和计划生育,所有这些都可能受到癌症及其治疗的影响。在这项研究中,我们与幸存者共同设计了一个可分发的数字工具,用于评估这一人群的需求。由于已知农村或医疗服务不足地区幸存者的结果存在差异,因此最初的工具开发侧重于一个此类地区(印第安纳州西南部)AYA幸存者的反馈。
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引用次数: 0
Use of Screening Tools to Measure Supportive Care Needs in Former Cancer Patients of Adolescent and Young Adult Age: A Systematic Review of the Literature. 使用筛选工具测量青少年和青年年龄前癌症患者的支持性护理需求:文献的系统回顾。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-03-17 DOI: 10.1089/jayao.2024.0108
Amandine Bertrand, Valentine Baudry, Celine Bodelet, Magali Girodet, Véronique Christophe

With the increasing number cancer survivors treated during pediatric, adolescent and young adult (AYA) ages, it has become essential to develop comprehensive long-term follow-up care tailored to each patient. The combination of being a cancer survivor and reaching AYA age at the time of long-term follow-up can make adherence to the proposed follow-up care challenging. To overcome the difficulties associated with the lack of follow-up, it is important to identify supportive care needs (SCN) for this population using effective tools. The main objective of this systematic review was to explore the screening tools for SCN used in long-term follow-up of survivors who have reached AYA age. We conducted a literature search on PubMed, Cochrane, and Science Direct for studies published since 2004. Articles were screened independently by two reviewers. Data were extracted and descriptive analyses were performed. Of the 3968 articles found, 14 met the inclusion criteria. Seven studies used tools specifically designed for the study that were not previously validated. The three tools used in the other seven studies encompassed an average of only 2.8 SCN per study. The tools currently used in clinical practice are insufficient to provide a comprehensive assessment of the SCN of AYA-aged survivors during long-term follow-up.

随着越来越多的癌症幸存者在儿童、青少年和青年(AYA)年龄段接受治疗,为每位患者量身定制全面的长期随访护理变得至关重要。作为癌症幸存者和在长期随访时达到AYA年龄的结合可以使所建议的随访护理具有挑战性。为了克服与缺乏随访相关的困难,重要的是使用有效的工具确定这一人群的支持性护理需求(SCN)。本系统综述的主要目的是探索在AYA年龄的幸存者长期随访中用于SCN的筛查工具。我们在PubMed、Cochrane和Science Direct上检索了2004年以来发表的研究。文章由两位审稿人独立筛选。提取数据并进行描述性分析。在发现的3968篇文章中,有14篇符合纳入标准。七项研究使用了专门为研究设计的工具,这些工具之前没有经过验证。其他七项研究中使用的三种工具平均每项研究仅包含2.8个SCN。目前临床实践中使用的工具不足以在长期随访中对aya年龄幸存者的SCN进行全面评估。
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引用次数: 0
Rurality, Cardiovascular Risk Factors, and Early Cardiovascular Disease Among Childhood, Adolescent, and Young Adult Cancer Survivors. 儿童期、青少年和青年癌症幸存者的乡村性、心血管危险因素和早期心血管疾病
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-03-25 DOI: 10.1089/jayao.2024.0151
David H Noyd, Anna Bailey, Amanda Janitz, Talayeh Razzaghi, Sharon Bouvette, William Beasley, Ashley Baker, Sixia Chen, David Bard

Purpose: Cardiovascular risk factors (CVRFs) later in life potentiate risk for late cardiovascular disease (CVD) from cardiotoxic treatment among survivors. This study evaluated the association of baseline CVRFs and CVD in the early survivorship period. Methods: This analysis included patients ages 0-29 at initial diagnosis and reported in the institutional cancer registry between 2010 and 2017 (n = 1228). Patients who died within 5 years (n = 168), those not seen in the oncology clinic (n = 312), and those with CVD within one year of diagnosis (n = 17) were excluded. CVRFs (hypertension, diabetes, dyslipidemia, and obesity) within 1 year of initial diagnosis were constructed and extracted from the electronic health record based on discrete observations, ICD9/10 codes, and RxNorm codes for antihypertensives. Results: Among survivors (n = 731), 10 incident cases (1.4%) of CVD were observed between 1 and 5 years after the initial diagnosis. Public health insurance (p = 0.04) and late effects risk strata (p = 0.01) were positively associated with CVD. Among survivors with public insurance (n = 495), two additional cases of CVD were identified from claims data with an incidence of 2.4%. Survivors from rural areas had a 4.1 times greater risk of CVD compared with survivors from urban areas (95% CI: 1.1-15.3), despite adjustment for late effects risk strata. Conclusion: Clinically computable phenotypes for CVRFs among survivors through informatics methods were feasible. Although CVRFs were not associated with CVD in the early survivorship period, survivors from rural areas were more likely to develop CVD.

目的:生命后期的心血管危险因素(cvrf)增加了幸存者因心脏毒性治疗而发生晚期心血管疾病(CVD)的风险。本研究评估了早期生存期基线cvrf与CVD的关系。方法:本分析纳入了2010年至2017年在机构癌症登记处报告的初诊年龄为0-29岁的患者(n = 1228)。排除5年内死亡的患者(n = 168),未在肿瘤诊所见过的患者(n = 312),以及诊断后1年内患有心血管疾病的患者(n = 17)。基于离散观察、ICD9/10代码和抗高血压药物RxNorm代码,构建并提取了初始诊断1年内的cvrf(高血压、糖尿病、血脂异常和肥胖)。结果:在幸存者(n = 731)中,10例(1.4%)CVD事件发生在首次诊断后的1至5年。公共健康保险(p = 0.04)和晚期效应风险层(p = 0.01)与CVD呈正相关。在有公共保险的幸存者中(n = 495),从索赔数据中确定了另外2例心血管疾病,发病率为2.4%。尽管对后期影响风险层进行了调整,但农村地区的幸存者患心血管疾病的风险是城市地区幸存者的4.1倍(95% CI: 1.1-15.3)。结论:通过信息学方法在幸存者中获得临床可计算的cvrf表型是可行的。尽管cvrf在早期生存期与CVD无关,但农村地区的幸存者更有可能发展为CVD。
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引用次数: 0
Travel Time to Fertility Specialty Care Among Reproductive-Age Cancer Survivors. 育龄癌症幸存者前往生育专业护理的旅行时间。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-05-02 DOI: 10.1089/jayao.2024.0023
Nidia Rodriguez-Ormaza, Paul L Delamater, Melissa A Troester, Stephanie B Wheeler, Christopher D Baggett, Clare Meernik, Jennifer E Mersereau, Valerie L Baker, Ethan Wantman, Hazel B Nichols

Purpose: Adolescent and young adult (AYA) women facing gonadotoxic cancer treatments are recommended to consider fertility preservation. However, fertility clinics are scarce in number and location. We describe geographic access to fertility clinics in a statewide cancer population. Methods: This cross-sectional study included 5,632 AYA women from the North Carolina Central Cancer Registry diagnosed with lymphoma, breast, or gynecological cancers who received gonadotoxic treatment during 2004-2015. Geographic access was defined as travel time from patient residence to the nearest fertility clinic at diagnosis. Multivariable logistic regression was used to calculate prevalence odds ratios (POR) and 95% confidence intervals (CIs) for the association between travel time and individual and contextual factors (neighborhood socioeconomic status and rurality). Results: Mean travel time was 51 ± 42 minutes, and 42% of AYAs lived <30 minutes from a clinic. Black non-Hispanic women, those living in advantaged neighborhoods, metropolitan areas, and privately insured had shorter average travel times. Black non-Hispanic women were more likely to live <30 minutes from a clinic than their white non-Hispanic counterparts (POR = 3.3; 95% CI: 2.8-3.8). Publicly insured (vs privately) AYAs and those living in the most (vs least) deprived neighborhoods were 40% less likely to live within a 30-minute drive (POR for both = 0.6; 95% CI: 0.5-0.7). Compared to metropolitan areas, micropolitan (small city) residents were less likely to live <30 minutes from a clinic. Conclusion: The burden of travel time to fertility clinics showed important differences by race and ethnicity, neighborhood SES, insurance, and rurality. The results emphasize the need for tailored and multifaceted strategies to improve access.

目的:青春期和青壮年(AYA)妇女面临性腺毒性癌症治疗建议考虑生育保留。然而,生育诊所在数量和位置上都很稀少。我们描述地理访问生育诊所在全州癌症人口。方法:这项横断面研究包括来自北卡罗来纳州中央癌症登记处的5,632名被诊断为淋巴瘤、乳腺癌或妇科癌症的AYA妇女,她们在2004-2015年期间接受了促性腺毒素治疗。地理可及性定义为诊断时从患者住所到最近的生育诊所的旅行时间。使用多变量logistic回归计算旅行时间与个人和环境因素(社区社会经济地位和乡村性)之间关联的患病率比值比(POR)和95%置信区间(CIs)。结果:平均乘车时间为51±42分钟,有42%的妇女存活。结论:不同种族、民族、社会经济状况、保险情况和农村状况对前往生育诊所的乘车时间负担有重要影响。研究结果强调,需要制定量身定制的、多方面的战略来改善获取途径。
{"title":"Travel Time to Fertility Specialty Care Among Reproductive-Age Cancer Survivors.","authors":"Nidia Rodriguez-Ormaza, Paul L Delamater, Melissa A Troester, Stephanie B Wheeler, Christopher D Baggett, Clare Meernik, Jennifer E Mersereau, Valerie L Baker, Ethan Wantman, Hazel B Nichols","doi":"10.1089/jayao.2024.0023","DOIUrl":"10.1089/jayao.2024.0023","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescent and young adult (AYA) women facing gonadotoxic cancer treatments are recommended to consider fertility preservation. However, fertility clinics are scarce in number and location. We describe geographic access to fertility clinics in a statewide cancer population. <b><i>Methods:</i></b> This cross-sectional study included 5,632 AYA women from the North Carolina Central Cancer Registry diagnosed with lymphoma, breast, or gynecological cancers who received gonadotoxic treatment during 2004-2015. Geographic access was defined as travel time from patient residence to the nearest fertility clinic at diagnosis. Multivariable logistic regression was used to calculate prevalence odds ratios (POR) and 95% confidence intervals (CIs) for the association between travel time and individual and contextual factors (neighborhood socioeconomic status and rurality). <b><i>Results:</i></b> Mean travel time was 51 ± 42 minutes, and 42% of AYAs lived <30 minutes from a clinic. Black non-Hispanic women, those living in advantaged neighborhoods, metropolitan areas, and privately insured had shorter average travel times. Black non-Hispanic women were more likely to live <30 minutes from a clinic than their white non-Hispanic counterparts (POR = 3.3; 95% CI: 2.8-3.8). Publicly insured (vs privately) AYAs and those living in the most (vs least) deprived neighborhoods were 40% less likely to live within a 30-minute drive (POR for both = 0.6; 95% CI: 0.5-0.7). Compared to metropolitan areas, micropolitan (small city) residents were less likely to live <30 minutes from a clinic. <b><i>Conclusion:</i></b> The burden of travel time to fertility clinics showed important differences by race and ethnicity, neighborhood SES, insurance, and rurality. The results emphasize the need for tailored and multifaceted strategies to improve access.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"504-515"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144036092","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
Trends in the Incidence of Cancer Among Adolescents and Young Adults Between 2000 and 2020: A Study Based on French Population-Based Registry Data. 2000年至2020年间青少年和年轻人癌症发病率的趋势:一项基于法国人口登记数据的研究
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-03-17 DOI: 10.1089/jayao.2024.0136
Emmanuel Desandes, Jacqueline Clavel, Florence Molinié, Patricia Delafosse, Brigitte Trétarre, Thomas Systchenko, Michel Velten, Gaelle Coureau, Karima Hammas, Anne Cowppli-Bony, Anne-Sophie Woronoff, Vincent Démaret, Olivier Ganry, Nicolas Vigneron, Simona Bara, Laetitia Daubisse-Marliac, Florent Huré-Papaïconomou, Alain Monnereau, Xavier Troussard, Isabelle Baldi, Guy Launoy, Brigitte Lacour, Perrine Marec-Berard

Purpose: The recent rise in the incidence of cancer in younger adults has been described in high-income countries. This study aimed to identify cancer incidence trends in France among adolescent and young adult (AYA) population. Methods: All cases of cancer diagnosed in 15-39 years, recorded by all French population-based registries (24% of the population), over the 2000-2020 period, were included. World age-standardized incidence rates (ASR) and annual percentage change (APC) of incidence over time were calculated. Results: We analyzed 54,735 cancer diagnoses in AYAs. The ASR over the 2000-2020 period in 15-39 years was 58.1 per 100,000 (95% confidence interval [CI] 57.0-59.2). ASR was lower in males (47.2 [45.7-48.6]) than in females (68.9 [67.2-70.6]). Incidence per 100,000 differed with age group from the lowest, 20.5 (19.8-21.2) in 15-19 years, to the highest, 130.3 (128.6-132.0) in 35-39 years. Increases in incidence were observed for essential thrombocythemia (APC: 3.33% [1.52-5.16]), Hodgkin lymphoma (HL) (APC: 1.86% [1.21-2.52]), liposarcoma (APC: 3.68% [0.83-6.61]), carcinomas of urinary tract (APC: 3.95% [2.85-5.06]), gastrointestinal tract (APC: 2.62% [1.96-3.28]), and breast (APC:  1.61% [1.22-2.01]) from 2000 to 2020, glioblastoma (APC: 6.11% [3.06-9.26]), and other astrocytomas (APC: 7.41% [5.13-9.75]) from 2005 to 2020. Decreases in incidence were observed for oligodendroglioma (APC: -8.78% during 2005-2020), and other invasive carcinomas (APC: -3.34% during 2000-2020). Conclusion: Increases in the incidence of some AYA cancer types are observed HL, liposarcoma, carcinomas of colorectum, breast, and kidney. Results for central nervous system tumors are still to be confirmed in the years to come. Extensive efforts are needed to identify underlying risk factors responsible for these trends to inform prevention strategies.

目的:最近在高收入国家,年轻人中癌症发病率有所上升。本研究旨在确定法国青少年和年轻成人(AYA)人群的癌症发病率趋势。方法:纳入2000-2020年期间法国所有以人口为基础的登记处记录的15-39年内诊断出的所有癌症病例(占人口的24%)。计算世界年龄标准化发病率(ASR)和发病率随时间的年百分比变化(APC)。结果:我们分析了54,735例AYAs的癌症诊断。2000-2020年期间15-39年的ASR为58.1 / 100,000(95%可信区间[CI] 57.0-59.2)。男性ASR(47.2[45.7-48.6])低于女性(68.9[67.2-70.6])。每10万人中发病率不同年龄组从15-19岁最低20.5(19.8-21.2)到35-39岁最高130.3(128.6-132.0)。2000年至2020年,原发性血小板增多症(APC: 3.33%[1.52-5.16])、霍奇金淋巴瘤(APC: 1.86%[1.21-2.52])、脂肪肉瘤(APC: 3.68%[0.83-6.61])、尿路癌(APC: 3.95%[2.85-5.06])、胃肠道癌(APC: 2.62%[1.96-3.28])、乳腺癌(APC: 1.61%[1.22-2.01])、胶质母细胞瘤(APC: 6.11%[3.06-9.26])和其他星形细胞瘤(APC: 7.41%[5.13-9.75])的发病率均有所增加。少突胶质细胞瘤(APC: 2005-2020年-8.78%)和其他浸润性癌(APC: 2000-2020年-3.34%)的发病率均有所下降。结论:肝细胞癌、脂肪肉瘤、结直肠癌、乳腺癌和肾癌的发生率均有增加。中枢神经系统肿瘤的结果在未来几年仍有待证实。需要作出广泛努力,确定导致这些趋势的潜在风险因素,以便为预防战略提供信息。
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引用次数: 0
All Hands on Deck: A Novel Collaborative Model for Care Provision in Young Adult Oncology. 全体人员在甲板上:一个新的合作模式的护理提供在年轻的成人肿瘤。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-04-28 DOI: 10.1089/jayao.2024.0141
Julie S W Childers, Jacob N Stein, Catherine Swift, Daniel Kleissler, Emily Haines, Melissa Matson, Stephanie Shea, Jennifer Hanspal, Kevin Chen, Vineeta Rao, Andrew B Smitherman, Juneko E Grilley-Olson, Lauren Lux

Purpose: Young adults (YAs) with cancer are a distinct and complex population, yet few interventions exist to meet their unique needs. Sarcomas disproportionately affect YAs, confer a high symptom burden and poor prognosis, and require multidisciplinary management. We sought to improve the delivery of goal-concordant care to YAs with sarcoma; enhance communication among clinicians, patients, and families; provide education around YA-specific needs; and support one another in serving this population. Methods: This study was submitted to the institutional review board and determined to be exempt. We established an innovative transdisciplinary collaborative combining medical oncology, palliative care, and social work expertise. We conduct joint visits, normalizing psychosocial and palliative care support and allowing for real-time tailoring of communication. Through iterative assessments, we track symptom trajectories and fluctuations in psychosocial needs, revisiting goals of care alongside clinical transitions. Biweekly rounds facilitate a shared approach to meet patients' needs. A retrospective chart abstraction identifies rates of contact with our YA team and advanced care planning (ACP) documentation. Results: Between 2020 and 2022, our team cared for 56 YAs (median age = 28 years, range = 18-42) with primarily metastatic (76%) sarcomas. Our patients averaged 6 touchpoints with a YA social worker, 8 visits with a YA palliative care provider, and 14 visits with a YA medical oncologist. ACP documentation increased drastically. Conclusion: With no additional hospital resources and few workflow modifications, we established a functional transdisciplinary, collaborative team in support of YAs with sarcoma. Our model is both sustainable and adaptable to other cancer types and care settings.

目的:青年癌症患者是一个独特而复杂的人群,但很少有干预措施能满足他们的独特需求。肉瘤不成比例地影响YAs,赋予高症状负担和预后差,需要多学科管理。我们试图改善对患有肉瘤的YAs患者的目标一致性护理;加强临床医生、患者和家属之间的沟通;围绕青少年教育的具体需要提供教育;互相支持,为这些人服务。方法:本研究已提交给机构审查委员会,并被确定为豁免。我们建立了一个创新的跨学科合作,结合肿瘤医学、姑息治疗和社会工作专业知识。我们进行联合访问,使社会心理和姑息治疗支持正常化,并允许实时定制沟通。通过反复评估,我们追踪症状轨迹和心理社会需求的波动,在临床转变的同时重新审视护理目标。两周一次查房有助于采用共同的方法来满足患者的需求。一份回顾性的图表摘要确定了与我们的YA团队和高级护理计划(ACP)文件的接触率。结果:在2020年至2022年期间,我们的团队治疗了56例主要转移性(76%)肉瘤患者(中位年龄= 28岁,范围= 18-42岁)。我们的患者平均有6次与青少年期社会工作者接触,8次与青少年期姑息治疗提供者接触,14次与青少年期医学肿瘤学家接触。ACP文档急剧增加。结论:在没有额外的医院资源和很少的工作流程修改的情况下,我们建立了一个功能性的跨学科协作团队来支持YAs与肉瘤的治疗。我们的模式既可持续,又适用于其他癌症类型和护理环境。
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引用次数: 0
Optimizing Support for Adolescent and Young Adult Cancer Survivors: Recommendations on Exercise, Nutrition, and Post-Treatment Care Needs from a Qualitative Study. 对青少年和青年癌症幸存者的优化支持:一项定性研究中关于运动、营养和治疗后护理需求的建议。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-04-30 DOI: 10.1089/jayao.2025.0009
Andrew Murnane, Nicole Kiss, Jeremy Lewin, Steve F Fraser, Anna Ugalde

Purpose: The aim of this study is to understand how adolescent and young adult cancer survivors (AYA-CS) interact with exercise and nutrition information and programs after treatment, to explore their experiences in accessing these supports, and to identify where they perceive gaps to be in their care. This will include the perspectives of both AYA-CS and the health care professionals who deliver these services. Methods: A qualitative study using semistructured interviews, undertaken via Zoom. Group 1 consisted of AYA-CS, aged between 15 and 25 years of age at the time of diagnosis who had completed their primary treatment. Group 2 was made up of oncology health care professionals including medical, nursing, and allied health professionals who had a minimum of 2 years' experience working with AYA cancer patients. Thematic analysis was conducted in an inductive manner to develop themes reflecting the needs and experiences of AYA-CS. Results: Eleven AYA-CS and seven health care professionals, from Australia, treated and working across adult and pediatric settings participated in the interviews. The analysis identified three primary themes "The ongoing impacts of a cancer diagnosis," "age as a critical construct," and "delivering optimal care." Conclusions: Findings highlight the number of challenges young people face in accessing necessary well-being supports post-treatment, emphasizing the need for individualized exercise and diet interventions. There is a need for health care services to better identify and tailor support for AYA-CS to ensure that their needs are met. Further research is needed to integrate these priorities into clinical practice.

目的:本研究的目的是了解青少年和青年癌症幸存者(AYA-CS)如何在治疗后与运动和营养信息和计划相互作用,探索他们在获得这些支持方面的经验,并确定他们在护理方面的差距。这将包括AYA-CS和提供这些服务的保健专业人员的观点。方法:采用半结构化访谈的定性研究,通过Zoom进行。第1组由AYA-CS组成,年龄在15至25岁之间,在诊断时完成了初级治疗。第二组由肿瘤卫生保健专业人员组成,包括医疗、护理和联合卫生专业人员,他们至少有2年与AYA癌症患者一起工作的经验。采用归纳分析的方法进行主题分析,以制定出反映亚洲文化与文化交流需求和经验的主题。结果:来自澳大利亚的11名AYA-CS和7名卫生保健专业人员参与了访谈,他们在成人和儿科环境中接受治疗和工作。分析确定了三个主要主题:“癌症诊断的持续影响”、“年龄是一个关键结构”和“提供最佳护理”。结论:研究结果强调了年轻人在治疗后获得必要的健康支持方面面临的挑战,强调了个性化运动和饮食干预的必要性。保健服务部门需要更好地确定和调整对儿童和青少年服务的支持,以确保满足他们的需求。需要进一步的研究将这些优先事项纳入临床实践。
{"title":"Optimizing Support for Adolescent and Young Adult Cancer Survivors: Recommendations on Exercise, Nutrition, and Post-Treatment Care Needs from a Qualitative Study.","authors":"Andrew Murnane, Nicole Kiss, Jeremy Lewin, Steve F Fraser, Anna Ugalde","doi":"10.1089/jayao.2025.0009","DOIUrl":"10.1089/jayao.2025.0009","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> The aim of this study is to understand how adolescent and young adult cancer survivors (AYA-CS) interact with exercise and nutrition information and programs after treatment, to explore their experiences in accessing these supports, and to identify where they perceive gaps to be in their care. This will include the perspectives of both AYA-CS and the health care professionals who deliver these services. <b><i>Methods:</i></b> A qualitative study using semistructured interviews, undertaken via Zoom. Group 1 consisted of AYA-CS, aged between 15 and 25 years of age at the time of diagnosis who had completed their primary treatment. Group 2 was made up of oncology health care professionals including medical, nursing, and allied health professionals who had a minimum of 2 years' experience working with AYA cancer patients. Thematic analysis was conducted in an inductive manner to develop themes reflecting the needs and experiences of AYA-CS. <b><i>Results:</i></b> Eleven AYA-CS and seven health care professionals, from Australia, treated and working across adult and pediatric settings participated in the interviews. The analysis identified three primary themes \"<i>The ongoing impacts of a cancer diagnosis</i>,\" \"<i>age as a critical construct</i>,\" and \"<i>delivering optimal care</i>.\" <b><i>Conclusions:</i></b> Findings highlight the number of challenges young people face in accessing necessary well-being supports post-treatment, emphasizing the need for individualized exercise and diet interventions. There is a need for health care services to better identify and tailor support for AYA-CS to ensure that their needs are met. Further research is needed to integrate these priorities into clinical practice.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"466-473"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143984099","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
Prevalence and Impact of Sexual Complaints on Depressive Symptoms in Adolescents and Young Adults with Cancer: A Cross-Sectional Sub-Study. 青少年和青年癌症患者性抱怨的患病率及对抑郁症状的影响:一项横断面亚研究
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2025-12-01 Epub Date: 2025-05-07 DOI: 10.1089/jayao.2024.0150
Line Bentsen, Vera Belgers, Annamaria Giraldi, Annika von Heymann, Christoffer Johansen, Karin Piil, Helle Pappot

Purpose: Adolescents and young adults (AYAs) diagnosed with cancer face unique psychosocial challenges, including sexual complaints. Despite the prevalence of these sexual issues, they are underexplored in AYA oncology care. The aim of this study is firstly to examine the prevalence of sexual complaints among AYAs with cancer across genders, age groups, and types of cancer. Second, we explore the association between sexual complaints and depressive symptoms. Methods: This cross-sectional sub-study included 305 AYAs (aged 15-39 at diagnosis) actively affiliated with the oncology department at Copenhagen University Hospital-Rigshospitalet. Participants completed questionnaires assessing sexual complaints and depressive symptoms. Sexual problems, distress, satisfaction, and willingness to discuss these issues were analyzed alongside demographic, clinical, and treatment data. Univariate and multivariable regression analyses evaluated associations with depressive symptoms. Results: Sexual problems affected 63.9% of AYAs, 49.5% experienced sexual distress, and 58.4% were dissatisfied with their sexual lives. Younger AYAs reported higher sexual satisfaction than older AYAs. Sexual distress, dissatisfaction, and reluctance to discuss sexual issues were associated with increased depressive symptoms in the univariate analysis. In the multivariable model, sexual distress remained independently associated with depressive symptoms, alongside age at diagnosis, civil status, cancer type, and pain. Conclusion: Sexual complaints, particularly distress, are prevalent among AYAs with cancer and are significantly associated with depressive symptoms. Integrating routine discussions about sexual health into oncology care could probably improve mental health outcomes and overall quality of life for this vulnerable group. Future research should focus on targeted interventions to address these interconnected challenges.

目的:被诊断患有癌症的青少年和青壮年(AYAs)面临着独特的心理社会挑战,包括性抱怨。尽管这些性问题普遍存在,但在AYA肿瘤治疗中尚未得到充分探讨。本研究的目的是首先检查不同性别、年龄和癌症类型的aya癌症患者的性投诉患病率。其次,我们探讨了性抱怨和抑郁症状之间的关系。方法:本横断面亚研究纳入305名活跃于哥本哈根大学医院肿瘤科的AYAs(诊断时年龄15-39岁)。参与者完成了评估性抱怨和抑郁症状的问卷。性问题、痛苦、满意度和讨论这些问题的意愿与人口统计学、临床和治疗数据一起进行了分析。单变量和多变量回归分析评估了与抑郁症状的关系。结果:63.9%的青少年存在性问题,49.5%的青少年存在性困扰,58.4%的青少年对性生活不满意。年轻的AYAs报告的性满意度高于年长的AYAs。在单变量分析中,性困扰、不满意和不愿讨论性问题与抑郁症状的增加有关。在多变量模型中,性困扰与抑郁症状、诊断年龄、公民身份、癌症类型和疼痛独立相关。结论:性抱怨,尤其是痛苦,在aya癌症患者中普遍存在,并与抑郁症状显著相关。将关于性健康的常规讨论纳入肿瘤护理可能会改善这一弱势群体的心理健康结果和整体生活质量。未来的研究应侧重于有针对性的干预措施,以解决这些相互关联的挑战。
{"title":"Prevalence and Impact of Sexual Complaints on Depressive Symptoms in Adolescents and Young Adults with Cancer: A Cross-Sectional Sub-Study.","authors":"Line Bentsen, Vera Belgers, Annamaria Giraldi, Annika von Heymann, Christoffer Johansen, Karin Piil, Helle Pappot","doi":"10.1089/jayao.2024.0150","DOIUrl":"10.1089/jayao.2024.0150","url":null,"abstract":"<p><p><b><i>Purpose:</i></b> Adolescents and young adults (AYAs) diagnosed with cancer face unique psychosocial challenges, including sexual complaints. Despite the prevalence of these sexual issues, they are underexplored in AYA oncology care. The aim of this study is firstly to examine the prevalence of sexual complaints among AYAs with cancer across genders, age groups, and types of cancer. Second, we explore the association between sexual complaints and depressive symptoms. <b><i>Methods:</i></b> This cross-sectional sub-study included 305 AYAs (aged 15-39 at diagnosis) actively affiliated with the oncology department at Copenhagen University Hospital-Rigshospitalet. Participants completed questionnaires assessing sexual complaints and depressive symptoms. Sexual problems, distress, satisfaction, and willingness to discuss these issues were analyzed alongside demographic, clinical, and treatment data. Univariate and multivariable regression analyses evaluated associations with depressive symptoms. <b><i>Results:</i></b> Sexual problems affected 63.9% of AYAs, 49.5% experienced sexual distress, and 58.4% were dissatisfied with their sexual lives. Younger AYAs reported higher sexual satisfaction than older AYAs. Sexual distress, dissatisfaction, and reluctance to discuss sexual issues were associated with increased depressive symptoms in the univariate analysis. In the multivariable model, sexual distress remained independently associated with depressive symptoms, alongside age at diagnosis, civil status, cancer type, and pain. <b><i>Conclusion:</i></b> Sexual complaints, particularly distress, are prevalent among AYAs with cancer and are significantly associated with depressive symptoms. Integrating routine discussions about sexual health into oncology care could probably improve mental health outcomes and overall quality of life for this vulnerable group. Future research should focus on targeted interventions to address these interconnected challenges.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"482-493"},"PeriodicalIF":1.2,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144036091","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
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Journal of adolescent and young adult oncology
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