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Cancer Screening Uptake and Usual Source of Care Among Hispanic Survivors of Adolescent and Young Adult Cancer. 西班牙裔青少年和青年癌症幸存者的癌症筛查吸收和常规护理来源
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-03-10 DOI: 10.1177/21565333251361619
Eunju Choi, Amy M Berkman, Clark R Andersen, John M Salsman, Andrea C Betts, Joel Milam, Kimberly A Miller, Susan K Peterson, Qian Lu, Christabel K Cheung, Lauren V Ghazal, J A Livingston, Michelle A T Hildebrandt, Susan K Parsons, David R Freyer, Michael E Roth

Purpose: This study examines cancer screening rates and the usual source of care among Hispanic survivors of adolescent and young adult (AYA, aged 15-39) cancer, a group at increased risk for poor health outcomes, including secondary cancers.

Methods: National Health Interview Survey data were analyzed to identify Hispanic survivors of AYA cancer and Hispanic age- and sex-matched non-cancer controls. Breast, cervical, and colorectal screening (ever screened and up-to-date according to the U.S. Preventive Services Task Force recommendations) as well as reporting a usual source of care were compared among survivors and controls eligible for screening using multivariable logistic regressions.

Results: Hispanic survivors were significantly more likely than Hispanic controls to report up-to-date cervical (43.8% vs. 25.5%, p < 0.001) and colorectal (43.1% vs. 21.8%, p = 0.002) cancer screenings. Eligible female survivors were also significantly more likely than controls to report ever having been screened for breast (86.9% vs. 60.6%, p < 0.001) and cervical (43.3% vs. 17.2%, p < 0.001) cancers. Additionally, survivors were significantly more likely than controls to report a usual source of care (74.4% vs. 49.9%, p < 0.001).

Conclusion: Although Hispanic survivors of AYA cancers were more likely than Hispanic individuals without a history of cancer to report up-to-date cancer screening, screening rates among both groups remain low. Notably, approximately one-quarter of survivors reported lacking a usual source of care, indicating potential gaps in preventive health care access. The findings highlight the need for targeted interventions to improve cancer screening uptake among Hispanic survivors of AYA cancer.

目的:本研究调查了西班牙裔青少年和年轻人(AYA, 15-39岁)癌症幸存者的癌症筛查率和通常的护理来源,这是一个健康状况不佳的群体,包括继发性癌症的风险增加。方法:分析国家健康访谈调查数据,以确定西班牙裔AYA癌症幸存者和西班牙裔年龄和性别匹配的非癌症对照。使用多变量logistic回归,比较了幸存者和符合筛查条件的对照组的乳腺、宫颈和结直肠筛查(根据美国预防服务工作组的建议进行过筛查和最新筛查)以及报告的常规护理来源。结果:西班牙裔幸存者报告最新宫颈(43.8% vs. 25.5%, p < 0.001)和结直肠癌(43.1% vs. 21.8%, p = 0.002)癌症筛查的可能性明显高于西班牙裔对照组。符合条件的女性幸存者也比对照组更有可能报告曾经接受过乳腺癌筛查(86.9%对60.6%,p < 0.001)和宫颈癌筛查(43.3%对17.2%,p < 0.001)。此外,幸存者比对照组更有可能报告常规护理来源(74.4%对49.9%,p < 0.001)。结论:尽管西班牙裔AYA癌症幸存者比没有癌症史的西班牙裔患者更有可能报告最新的癌症筛查,但两组的筛查率仍然很低。值得注意的是,大约四分之一的幸存者报告缺乏通常的护理来源,这表明在获得预防性保健方面存在潜在差距。研究结果强调了有针对性的干预措施的必要性,以提高西班牙裔AYA癌症幸存者的癌症筛查率。
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引用次数: 0
Effect of Acupuncture and Massage on Pain in Adolescent and Young Adult Patients with Advanced Cancer: Subgroup Analysis of a Randomized Clinical Trial. 针刺和按摩对青少年晚期癌症患者疼痛的影响:一项随机临床试验的亚组分析。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-02-19 DOI: 10.1177/21565333251368891
Han-Wei V Wu, Xiaotong Li, Qing S Li, Raymond E Baser, Katherine S Panageas, Susan Chimonas, William D Tap, Julia Glade Bender, Chaya S Moskowitz, Jun J Mao

Purpose: Pain management remains challenging for adolescent and young adult (AYA) cancer patients. Acupuncture and massage have been recommended for cancer-related pain management, but no prospective trials have been conducted in AYA patients. We explored the effects of acupuncture and massage on pain in AYAs.

Methods: This subgroup analysis focused on AYA patients (aged 18-39 years) enrolled in a randomized controlled trial comparing acupuncture and massage for pain management in advanced cancer. Interventions were delivered weekly for 10 weeks, followed by monthly booster treatments through week 26. The primary outcome was the worst pain score from the Brief Pain Inventory, analyzed using a linear mixed-effects model.

Results: Thirty participants met eligibility criteria (13 acupuncture; 17 massage), with a mean age of 31.1 years (standard deviation, 5.8); 57% were female; 67% were White; and 53% had solid tumors. Both groups experienced reduced pain over time. Relative to baseline, patients receiving acupuncture had a mean change of -1.26 points (95% confidence interval [CI], -2.54 to 0.01) at 10 weeks and a mean change of -1.46 points (95% CI, -2.78 to -0.14) at 26 weeks. Patients receiving massage experienced a mean change of -2.81 points (95% CI, -3.92 to -1.70) at week 10 and a mean change of -3.79 points (95% CI, -4.85 to -2.73) at week 26.

Conclusion: AYA patients with advanced cancer who received either acupuncture or massage experienced clinically meaningful and sustained reductions in pain. These findings provide a promising foundation for future trials aimed at evaluating integrative pain management strategies in AYAs.

目的:青少年和年轻成人(AYA)癌症患者的疼痛管理仍然具有挑战性。针灸和按摩已被推荐用于癌症相关疼痛管理,但尚未在AYA患者中进行前瞻性试验。我们探讨了针刺和按摩对AYAs疼痛的影响。方法:该亚组分析集中于AYA患者(18-39岁),他们参加了一项比较针灸和按摩治疗晚期癌症疼痛的随机对照试验。干预措施每周进行一次,持续10周,然后每月进行一次强化治疗,直到第26周。主要结果是根据简短疼痛量表的最差疼痛评分,使用线性混合效应模型进行分析。结果:30名受试者符合入选标准(13次针灸;17次按摩),平均年龄31.1岁(标准差5.8);57%为女性;67%为白人;53%患有实体瘤。随着时间的推移,两组人的疼痛都有所减轻。相对于基线,接受针灸治疗的患者在10周时平均变化为-1.26点(95%可信区间[CI], -2.54至0.01),在26周时平均变化为-1.46点(95% CI, -2.78至-0.14)。接受按摩的患者在第10周平均变化为-2.81点(95% CI, -3.92至-1.70),在第26周平均变化为-3.79点(95% CI, -4.85至-2.73)。结论:接受针灸或按摩治疗的AYA晚期癌症患者在临床上经历了有意义且持续的疼痛减轻。这些发现为未来旨在评估AYAs综合疼痛管理策略的试验提供了有希望的基础。
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引用次数: 0
Feedback on Adapting Interventions for AYA Cancer Survivors' and Caregivers' Psychological Distress, Symptom Management, and Health Care Use. 对AYA癌症幸存者和照顾者心理困扰、症状管理和卫生保健使用的适应性干预的反馈。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2025-12-11 DOI: 10.1177/21565333251369687
Echo L Warner, Jennifer Traslavina Jimenez, Alla Sikorskii, Chris Segrin, Tracy Crane, Terry A Badger

Purpose: Adolescents and young adults (AYAs) experience higher burdens of negative psychological outcomes (e.g., depression, anxiety, and stress) of cancer compared to older survivors and caregivers. We elicited feedback about the adaptation of two randomized controlled trials (RCTs), one using a symptom management and survivorship handbook (SMSH) and another using telephone-based interpersonal counseling, for AYA cancer survivors and caregivers of AYAs.

Methods: Following the parent RCT, we conducted a follow-up study using semi-structured telephone interviews to elicit feedback from AYAs (ages 18-39 years at diagnosis) and adult caregivers of AYAs (aged 18+). Participants were asked to share satisfaction with the (1) content, (2) delivery, and (3) general experiences in the study. Interviews were recorded, transcribed, and quality checked. We categorized qualitative feedback through interpretive description.

Results: There were N = 18 participants 10 women and 8 men; 8 cancer survivors and 10 caregivers. The interviews were 5-20 minutes (average = 10.5 minutes). Participants enjoyed the content and found the information helpful. Participants preferred digital materials for accessing information about cancer symptom management and treatment. Some participants continue to use the information from the SMSH after their participation.

Conclusions: AYA cancer survivors and caregivers of AYAs were largely satisfied with the content of the intervention materials. Minor suggestions arose to modify the intervention materials to be more suitable through including digital materials and social connections.

目的:与老年幸存者和照顾者相比,青少年和年轻人(AYAs)经历了更高的癌症负面心理结果负担(如抑郁、焦虑和压力)。我们收集了两项随机对照试验(rct)的适应性反馈,一项使用症状管理和幸存者手册(SMSH),另一项使用基于电话的人际咨询,针对AYA癌症幸存者和AYA的照顾者。方法:在父母随机对照试验的基础上,采用半结构化电话访谈的方式进行随访研究,以获取asa(诊断时年龄为18-39岁)和成人护理人员(18岁以上)的反馈。参与者被要求分享对(1)内容,(2)交付和(3)研究中的一般经验的满意度。采访被记录、转录并进行质量检查。我们通过解释性描述对定性反馈进行分类。结果:共入组18例,女性10例,男性8例;8名癌症幸存者和10名护理人员。访谈时间为5 ~ 20分钟(平均10.5分钟)。参与者喜欢这些内容,并发现这些信息很有帮助。参与者更喜欢数字材料来获取有关癌症症状管理和治疗的信息。部分参与者在参与后继续使用SMSH提供的资料。结论:AYA癌症幸存者和AYA护理者对干预材料的内容基本满意。有人建议通过数字材料和社会联系来修改干预材料,使其更适合。
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引用次数: 0
The UNI-AJA Project: A Feasibility Study Based on Real-World Data in French Adolescents and Young Adults with Cancer. UNI-AJA项目:基于法国青少年和青年癌症患者真实世界数据的可行性研究。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-02-19 DOI: 10.1177/21565333251359614
Emmanuel Desandes, Alizée Diatchenko, Hugo Crochet, Nicolas André, Jean-Yves Blay, Nathalie Gaspar, Lionnel Geoffrois, Sabine Heinrich, Pierre Kubicek, Valérie Laurence, Pierre Leblond, Cyril Lervat, Lise Molimard, Marilyne Poirée, Marion Salomon, Jill Serre, Maud Toulmonde, Pascale Varlet, Thierry Durand, Françoise Ducimetière, Perrine Marec-Berard

The UNI-AJA project is a French epidemiological study analyzing cancer care pathways and outcomes in adolescents and young adults (AYAs, 15-29 years) from 2009 to 2022. Using data from 10 health institutions and national databases, it will examine treatment types, delays, second cancers, long-term effects, and causes of death. The study will employ deterministic linkage for comprehensive patient tracking. It will assess care evolution, the impact of AYA-specific structures, and treatment consequences. Findings will support improved cancer management and policy decisions in France. This project may lay the foundation for a national clinico-epidemiological database for AYAs with cancer.

UNI-AJA项目是一项法国流行病学研究,分析2009年至2022年青少年和年轻人(15-29岁)的癌症护理途径和结果。利用来自10个卫生机构和国家数据库的数据,它将检查治疗类型、延误、第二次癌症、长期影响和死亡原因。该研究将采用确定性联系进行全面的患者跟踪。它将评估护理的演变、aya特异性结构的影响以及治疗后果。研究结果将支持改善法国的癌症管理和政策决定。该项目可为建立aya癌症患者的国家临床流行病学数据库奠定基础。
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引用次数: 0
Perspectives on Care Plans for Adolescent and Young Adult Survivors of Childhood Cancer: A Qualitative Evaluation of Survivors, Caregivers, and Oncology and Primary Care Practitioners. 儿童癌症的青少年和青年幸存者护理计划的观点:幸存者、护理者、肿瘤和初级保健从业人员的定性评估。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-03-10 DOI: 10.1177/21565333251362113
Katie Darabos, Janet A Deatrick, Courtney Benjamin Wolk, Bridget O'Hagan, Sara King-Dowling, Dava Szalda, Wendy Hobbie, Lamia P Barakat, Christine Hill-Kayser, Lisa A Schwartz

Purpose: Treatment advances have led to a rapidly growing population of adolescent and young adult (AYA, ages 15-29) survivors of childhood cancer. Despite cure, AYA are physically and psychologically vulnerable due to treatment toxicity, leading 70% to develop second cancers or chronic, often life-threatening, late effects. Self-management is critical for survivorship and includes lifelong follow-up care, health promotion, disease surveillance, and management of late effects. Survivorship care plans (SCPs) are documents to inform survivors and providers of recommendations for management of survivor health and to improve communication among providers. With limited SCP research to date, there are calls for rigorous research to understand SCP implementation.

Methods: Qualitative semistructured interviews were conducted to assess perceptions about SCPs, including barriers and facilitators of SCP implementation among 12 purposefully sampled AYAs who received an SCP in the extant trial, 8 caregivers of AYA, 10 oncology providers, and 8 pediatric primary care providers.

Results: Overall, SCPs were viewed as generally positive by AYA and caregivers, with caveats about ways to improve them or use them. Oncology providers also generally had a positive view of the SCP, but primary care practitioners found them to be less targeted to their specific needs.

Conclusion: Our results helped to clarify critical aspects of implementation that need to be addressed if SCPs are to be successfully implemented into survivorship care for AYA, especially as they transition to adult-oriented health care.

目的:治疗的进步导致儿童癌症的青少年和年轻成人(AYA,年龄15-29岁)幸存者人数迅速增长。尽管可以治愈,但由于治疗毒性,AYA在身体和心理上都很脆弱,导致70%的人患上第二种癌症或慢性,往往危及生命的晚期效应。自我管理对生存至关重要,包括终身随访护理、健康促进、疾病监测和后期影响管理。遗属护理计划(SCPs)是向遗属和提供者通报遗属健康管理建议并改善提供者之间沟通的文件。由于迄今为止SCP研究有限,因此需要进行严格的研究以了解SCP的实现。方法:采用定性半结构化访谈来评估对SCP的看法,包括在现有试验中有目的抽样的12名接受SCP的AYA, 8名AYA的护理人员,10名肿瘤提供者和8名儿科初级保健提供者中实施SCP的障碍和促进因素。结果:总体而言,AYA和护理人员普遍认为scp是积极的,并对如何改进或使用它们提出了警告。肿瘤学提供者也普遍对SCP持积极态度,但初级保健从业者发现他们的特定需求不太有针对性。结论:我们的结果有助于澄清实施的关键方面,如果要成功地将scp实施到AYA的生存护理中,特别是当它们过渡到以成人为导向的医疗保健时,需要解决这些问题。
{"title":"Perspectives on Care Plans for Adolescent and Young Adult Survivors of Childhood Cancer: A Qualitative Evaluation of Survivors, Caregivers, and Oncology and Primary Care Practitioners.","authors":"Katie Darabos, Janet A Deatrick, Courtney Benjamin Wolk, Bridget O'Hagan, Sara King-Dowling, Dava Szalda, Wendy Hobbie, Lamia P Barakat, Christine Hill-Kayser, Lisa A Schwartz","doi":"10.1177/21565333251362113","DOIUrl":"10.1177/21565333251362113","url":null,"abstract":"<p><strong>Purpose: </strong>Treatment advances have led to a rapidly growing population of adolescent and young adult (AYA, ages 15-29) survivors of childhood cancer. Despite cure, AYA are physically and psychologically vulnerable due to treatment toxicity, leading 70% to develop second cancers or chronic, often life-threatening, late effects. Self-management is critical for survivorship and includes lifelong follow-up care, health promotion, disease surveillance, and management of late effects. Survivorship care plans (SCPs) are documents to inform survivors and providers of recommendations for management of survivor health and to improve communication among providers. With limited SCP research to date, there are calls for rigorous research to understand SCP implementation.</p><p><strong>Methods: </strong>Qualitative semistructured interviews were conducted to assess perceptions about SCPs, including barriers and facilitators of SCP implementation among 12 purposefully sampled AYAs who received an SCP in the extant trial, 8 caregivers of AYA, 10 oncology providers, and 8 pediatric primary care providers.</p><p><strong>Results: </strong>Overall, SCPs were viewed as generally positive by AYA and caregivers, with caveats about ways to improve them or use them. Oncology providers also generally had a positive view of the SCP, but primary care practitioners found them to be less targeted to their specific needs.</p><p><strong>Conclusion: </strong>Our results helped to clarify critical aspects of implementation that need to be addressed if SCPs are to be successfully implemented into survivorship care for AYA, especially as they transition to adult-oriented health care.</p>","PeriodicalId":14769,"journal":{"name":"Journal of adolescent and young adult oncology","volume":" ","pages":"115-123"},"PeriodicalIF":1.2,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12997169/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144731048","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}
引用次数: 0
Current Practices in the Use of Anti-Mullerian Hormone for Surveillance of Ovarian Function in Childhood Cancer Survivors: A Report from the Pediatric and Adolescent Committee of the Oncofertility Consortium. 目前使用抗苗勒管激素监测儿童癌症幸存者卵巢功能的实践:一份来自肿瘤生育联合会儿科和青少年委员会的报告。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-03-10 DOI: 10.1177/21565333251359617
Kari Bjornard, Allison Close, Julie Rios, Antoinette Anazodo, Jennifer Levine, Christine Yu, Leena Nahata, Lillian Meacham

Purpose: Anti-Mullerian hormone (AMH) is a surrogate measure to assess ovarian reserve in childhood cancer survivors, but consensus is lacking on when to obtain and how to use AMH data.

Methods: Pediatric and adolescent committee (PAC) members of the Oncofertility Consortium were invited by email to complete a survey regarding ovarian reserve surveillance and their use of AMH. Responses were collected through REDCap, and results were stratified by specialty: pediatric oncology and endocrinology (PED) or adult/pediatric gynecology and reproductive endocrinology (GYN). Descriptive statistics and Fisher's exact tests were used for analysis using SAS v9.4.

Results: Surveys were completed by 48 of 123 eligible PAC members (28 PED, 19 GYN, response rate 39%). The majority (83.3%) reported using AMH as a measure of ovarian reserve, with the earliest timepoint to begin AMH surveillance to be 12-23 months from therapy completion (63%). While most respondents felt the benefits of testing outweighed the limitations (78.7%), commonly reported limitations included variability of results (60.4%) and lack of standardization in use of AMH (52.1%). Differences between PED and GYN respondents included how AMH was used among their clinical practice and the timing of laboratory evaluation.

Conclusions: Most respondents indicated they used AMH; however, practices in its application varied depending on specialty backgrounds. Evidence-based clinical practice guidelines would improve the standardization of surveillance and counseling and prevent missed opportunities for fertility preservation in survivorship.

目的:抗苗勒管激素(AMH)是评估儿童癌症幸存者卵巢储备的替代指标,但在何时获取和如何使用AMH数据方面缺乏共识。方法:通过电子邮件邀请Oncofertility Consortium的儿科和青少年委员会(PAC)成员完成关于卵巢储备监测及其AMH使用的调查。通过REDCap收集回复,并将结果按专业进行分层:儿科肿瘤学和内分泌学(PED)或成人/儿科妇科和生殖内分泌学(GYN)。使用SAS v9.4进行描述性统计和Fisher精确检验。结果:123名符合条件的PAC成员中有48人完成了问卷调查(PED 28人,GYN 19人,回复率39%)。大多数(83.3%)报告使用AMH作为卵巢储备的衡量标准,最早开始AMH监测的时间点是治疗完成后12-23个月(63%)。虽然大多数受访者认为检测的好处超过了局限性(78.7%),但通常报告的局限性包括结果的可变性(60.4%)和AMH使用缺乏标准化(52.1%)。PED和GYN受访者之间的差异包括AMH在临床实践中的使用方式和实验室评估的时间。结论:大多数受访者表示他们使用AMH;然而,其应用实践因专业背景而异。循证临床实践指南将提高监测和咨询的标准化,并防止在幸存者中错过保留生育能力的机会。
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引用次数: 0
A Children's Oncology Group Survey Exploring Practices and Barriers to Sperm Banking for Post-Pubertal Males with Newly Diagnosed High-Risk Acute Lymphoblastic Leukemia. 一项儿童肿瘤小组调查探讨了青春期后男性新诊断的高风险急性淋巴细胞白血病的做法和精子银行的障碍。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-03-10 DOI: 10.1177/21565333251364084
Jessica L Feuerstein, Burton Appel

This study examined sperm banking (SB) practices and barriers for post-pubertal males with high-risk acute lymphoblastic leukemia (ALL) prior to chemotherapy. A cross-sectional survey of 2345 Children's Oncology Group oncologists across the U.S., Canada, Australia, and New Zealand yielded 572 responses. While 78% offer SB, common barriers include timing (70%) and patient health (44%). Most institutions offering SB have a dedicated oncofertility team (57%), and 86% are medium- or large-sized, suggesting greater resource availability. These results extend prior research by identifying actionable barriers and informing targeted interventions to improve access to FP for post-pubertal males with ALL.

本研究探讨了青春期后患有高危急性淋巴细胞白血病(ALL)的男性在化疗前的精子库(SB)做法和障碍。对美国、加拿大、澳大利亚和新西兰的2345名儿童肿瘤小组肿瘤学家进行了横断面调查,得到了572份回复。虽然78%的人提供SB,但常见的障碍包括时间(70%)和患者健康(44%)。大多数提供SB的机构都有一个专门的肿瘤生育团队(57%),86%是中型或大型机构,这表明资源的可用性更高。这些结果通过确定可操作的障碍和告知有针对性的干预措施来改善青春期后ALL男性获得计划生育的机会,从而扩展了先前的研究。
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引用次数: 0
Adaptive Psychosocial Outcomes in Cancer Predisposition Syndromes: A Scoping Review. 癌症易感性综合征的适应性社会心理结局:范围综述。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2026-02-19 DOI: 10.1177/21565333251366387
Joan W Hanania, Kevin K Tsang, Chloe Rotman

An increasing number of cancer predisposition syndromes (CPSs) have been associated with childhood cancer in light of advent advances in genomic medicine. While children and adolescents with CPSs present with compounded medical and psychosocial sequalae across the developmental trajectory, little is known about how adaptive psychosocial outcomes are conceptualized and promoted. Exploring adaptive and modifiable targets in psychological care may potentially promote coping among patients with CPSs and their families. The study undertakes a scoping review to describe, synthesize, characterize, and identify gaps in the literature on adaptive psychosocial outcomes among young people with CPSs and their caregivers. Adhering to PRISMA Extension guidelines and checklist, a systematic search in four databases was most recently conducted in February 2024: (PubMed, EMBASE, CINAHL, and PsycINFO). A total of 642 titles were screened and 36 articles were reviewed at the full-text level. Of those, five met the study inclusion criteria. The majority of articles were descriptive and centered around caregivers of at-risk patients with CPSs. The scoping review describes what is known about adaptive psychosocial outcomes associated with pediatric CPS and underscores the substantial gap in existing literature. Several important findings were identified across studies: significance of undergoing genetic testing, perceived surveillance benefits, positive psychological outcomes, intra-family communication, young people and caregiver psychosocial support. Future research is needed to investigate adaptive psychosocial outcomes associated with CPSs and delineate potential coping mechanisms. Findings may inform the development and dissemination of evidence-based psychological approaches designed to promote coping with pediatric CPSs.

随着基因组医学的发展,越来越多的癌症易感综合征(cps)与儿童癌症有关。虽然患有cps的儿童和青少年在整个发展轨迹中都存在复杂的医疗和社会心理后遗症,但人们对适应性社会心理结果是如何概念化和促进的知之甚少。探索适应性和可修改的心理护理目标可能会潜在地促进cps患者及其家庭的应对。本研究进行了一项范围审查,以描述、综合、表征和确定文献中关于有cps的年轻人及其照顾者的适应性心理社会结局的空白。根据PRISMA Extension指南和检查表,我们于2024年2月对四个数据库(PubMed、EMBASE、CINAHL和PsycINFO)进行了系统检索。总共筛选了642个题目,并在全文一级审查了36篇文章。其中5人符合研究纳入标准。大多数文章都是描述性的,并以高危cps患者的护理人员为中心。该范围综述描述了已知的与儿科CPS相关的适应性社会心理结果,并强调了现有文献中的实质性差距。研究确定了几个重要发现:进行基因检测的重要性、感知到的监测益处、积极的心理结果、家庭内部沟通、年轻人和照顾者的社会心理支持。未来的研究需要调查与cps相关的适应性社会心理结果,并描述潜在的应对机制。研究结果可能为发展和传播旨在促进应对儿科cps的循证心理学方法提供信息。
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引用次数: 0
Program Delivery and Change in Patient-Reported Outcomes of an Age-Specific Rehabilitation Program for Young Adult Cancer Survivors: A Feasibility Study. 一项针对年轻成年癌症幸存者的年龄特异性康复计划的实施和患者报告结果的变化:可行性研究。
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-04-01 Epub Date: 2025-12-11 DOI: 10.1177/21565333251372461
Maria Aagesen, Marc Sampedro Pilegaard, Kirsten Holstein Ipsen, Dorthe Søsted Jørgesen, May Aasebø Hauken, Karen la Cour

Purpose: This study evaluated the program delivery of a part of the age-specific intervention Young Adult Taking Action (YATAC), a rehabilitation program for young adult cancer survivors, focusing on dose, adherence, fidelity and adaptation. It also explored changes in health-related quality of life, fatigue, depression, anxiety, and loneliness.

Methods: A one-armed feasibility study with 19 young adult cancer survivors (aged 18-39) involved in a multicomponent rehabilitation program a 5-day residential stay, a 10-week home-based period, and a 2-day follow-up. Program delivery data were collected during the stays, and patient-reported outcomes were assessed at baseline and 10 weeks. Changes were analyzed using the Wilcoxon signed-rank test, and responder analysis assessed minimal clinically relevant changes.

Results: All sessions were delivered, with 100% of participants completing the five-day and a two-day stay. Adherence and fidelity were both 83%, though 30% of sessions reported time constraints. Significant improvements were observed in cognitive functioning (p = 0.0046), fatigue (p = 0.0066), and anxiety (p = 0.0146). More participants showed minimal clinically relevant improvements in cognitive functioning (63%) than deteriorations. Fatigue was the only outcome with no reported clinically relevant deterioration.

Conclusion: The tested part of the YATAC program demonstrated feasibility with high adherence and fidelity. Some adjustments to session duration and structure are needed. The program showed potential to improve cognitive function, fatigue, and anxiety, though findings should be interpreted cautiously due to the small sample size and one-armed design.

目的:本研究评估了针对年轻成年癌症幸存者的特定年龄干预Young Adult Taking Action (YATAC)的部分项目交付情况,重点关注剂量、依从性、保真度和适应性。它还探讨了与健康相关的生活质量、疲劳、抑郁、焦虑和孤独的变化。方法:对19名年轻成年癌症幸存者(18-39岁)进行单臂可行性研究,他们参与了一项多组分康复计划,为期5天的住院治疗,10周的家庭康复期,以及2天的随访。在住院期间收集项目交付数据,并在基线和第10周评估患者报告的结果。使用Wilcoxon符号秩检验分析变化,应答者分析评估最小的临床相关变化。结果:所有的课程都完成了,100%的参与者完成了五天和两天的停留。坚持和忠实度均为83%,但30%的疗程表示时间有限。在认知功能(p = 0.0046)、疲劳(p = 0.0066)和焦虑(p = 0.0146)方面观察到显著改善。更多的参与者在认知功能方面表现出最小的临床相关改善(63%),而不是恶化。疲劳是唯一没有临床相关恶化报告的结果。结论:YATAC程序的测试部分具有较高的依从性和保真度。需要对会话持续时间和结构进行一些调整。该程序显示出改善认知功能、疲劳和焦虑的潜力,尽管由于样本量小和单臂设计,研究结果应谨慎解释。
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引用次数: 0
Health Priorities and Intervention Preferences among Young Adult Cancer Survivors: A Mixed-Methods Study. 年轻成年癌症幸存者的健康优先级和干预偏好:一项混合方法研究
IF 1.2 4区 医学 Q4 ONCOLOGY Pub Date : 2026-03-24 DOI: 10.1177/21565333261434224
Acadia W Buro, Adam Z Reynolds, Ellen Burgess, John A Torres, Mark Montoya, Mussammat Snigdha Sowrin, Monique Montes de Oca, Amy Gundelach, Jessica Valdez, Andrew L Sussman, Cindy K Blair

Purpose: Young adult (YA) cancer survivors aged 18-39 years face increased chronic disease risk. Although YA survivors prioritize health, structural barriers may limit their ability to maintain healthy lifestyles, particularly in culturally and geographically diverse regions. This mixed-methods study explored health priorities, social determinants of health (SDoH)-related barriers and facilitators to maintaining a healthy lifestyle, and intervention preferences for YA cancer survivors in New Mexico (NM) to inform future interventions.

Methods: Descriptive statistics and thematic analysis were conducted on surveys and semistructured interviews with 17 YA cancer survivors and 11 YA cancer care providers in NM. Surveys assessed demographics and, for survivors, SDoH, and intervention preferences.

Results: Social isolation was the most prevalent adverse SDoH, affecting 47% of YAs. YAs expressed interest in diet/physical activity-related programs (82%) and were flexible about group/one-on-one (59%) and in-person/online (71%) program formats. YA themes included: physical and mental health are priorities post-treatment; multilevel barriers and facilitators shape health behaviors; there is a lack of YA-specific resources; community building is key for peer support; support strategies to address psychosocial, behavioral, and health care navigation concerns are needed. Provider themes included: YAs have specific care needs during the survivorship transition to long-term wellness; collaborative, innovative organizational solutions are critical, peer and community support is effective, and integrating psychosocial and culturally informed care enhances outcomes; there is a need for empowering support tailored to the needs of YA survivors in NM.

Conclusion: Physical, mental, and social health are priorities for YA cancer survivors post-treatment. Findings highlight the need for flexible, community-informed interventions that support holistic health and long-term survivorship.

目的:18-39岁的年轻成人(YA)癌症幸存者面临慢性疾病风险增加。虽然青少年教育幸存者优先考虑健康问题,但结构性障碍可能限制他们保持健康生活方式的能力,特别是在文化和地理多样化的地区。这项混合方法研究探讨了新墨西哥州(NM) YA癌症幸存者的健康优先事项、健康的社会决定因素(SDoH)相关障碍和维持健康生活方式的促进因素,以及干预偏好,以告知未来的干预措施。方法:对17名青少年癌症幸存者和11名青少年癌症护理人员进行调查和半结构化访谈,进行描述性统计和专题分析。调查评估了人口统计数据,以及幸存者的SDoH和干预偏好。结果:社会隔离是最常见的不良SDoH,影响47%的青少年。ya表示对饮食/体育活动相关的项目感兴趣(82%),对团体/一对一(59%)和面对面/在线(71%)的项目形式持灵活态度。青少年协会的主题包括:治疗后的身心健康是优先事项;多层障碍和促进因素塑造健康行为;缺乏专门针对ya的资源;社区建设是同伴支持的关键;需要采取支持战略,解决社会心理、行为和保健导航方面的问题。提供者主题包括:在幸存者过渡到长期健康期间,有特定的护理需求;协作、创新的组织解决方案至关重要,同伴和社区支持是有效的,整合社会心理和文化知情护理可提高结果;有必要为NM中的YA幸存者提供量身定制的支持。结论:生理、心理和社会健康是治疗后YA癌幸存者的首要任务。研究结果强调需要采取灵活的、社区知情的干预措施,以支持整体健康和长期生存。
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Journal of adolescent and young adult oncology
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