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Recommendations for cancer related fatigue in post-treatment survivorship care: a cross-sectional analysis of guidelines. 治疗后生存护理中癌症相关疲劳的建议:指南的横断面分析。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-20 DOI: 10.1007/s11764-026-01973-y
Joshua Ayoson, Nadine Schneider, Sacha I Rothschild, Katharina Gut-Fischer, Eva Haegler-Laube, Maria M Wertli
<p><strong>Background/objective: </strong>Existing guidelines for the management of cancer-related fatigue (CRF) differ in scope, evidence strength, and implementation strategies, limiting consistent integration into post-treatment survivorship care. This study systematically evaluates and compares recommendations to identify best practices, highlight evidence gaps, and provide actionable insights for clinicians and policymakers.</p><p><strong>Methods: </strong>A systematic search was conducted across PubMed, the Cochrane Library, and professional society websites. Included were all guidelines from professional oncology societies addressing CRF management in adult cancer survivors and published in English between 2000 and December 2024. From 524 references screened, eleven (11) guidelines from eight (8) professional societies met the inclusion criteria and were analysed. The quality of the guidelines was assessed using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) criteria. Recommendations, their strength of evidence and strength of recommendations were extracted and standardized into the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework. The screening, grading, and extraction process was performed by two reviewers independently.</p><p><strong>Result: </strong>The quality of the eleven guidelines was high in three (27%), moderate in seven (64%), and poor in one (9%). Based on a moderate level of evidence, CRF should be screened at every patient encounter by all healthcare providers, with positive screens followed by referral to appropriate professionals for further assessment using one of several validated tools. A strong recommendation based on moderate evidence was for exercise. In particular, aerobic and resistance training of low to moderate intensity, three times per week for 12 weeks was recommended. Guidelines consistently issued a strong recommendation for CBT (moderate evidence), and for psychotherapy (variable evidence). CBT was recommended, especially with structured coping strategies or web-based delivery. Guidelines cautiously recommended mind-body interventions such as Yoga, Tai Chi, and Qigong based on variable strength of evidence and recommendation. Education andcounselling (particularly for depression-related fatigue) are mainly based on expert consensus rather than strong clinical trials. Other options may be considered in individual patients but are not supported by strong evidence.</p><p><strong>Conclusion: </strong>This guideline analysis demonstrates broad support for continued CRF screening during survivorship care, followed by assessment of contributing factors when fatigue is identified. Exercise, especially low- to moderate-intensity aerobic and resistance training, and cognitive behavioral therapy are consistently recommended across guidelines as effective interventions. Psychoeducation and counselling are also beneficial, especially for fatigue linked to menta
背景/目的:现有的癌症相关疲劳(CRF)治疗指南在范围、证据强度和实施策略上存在差异,限制了其与治疗后生存护理的一致性整合。本研究系统地评估和比较建议,以确定最佳做法,突出证据差距,并为临床医生和政策制定者提供可操作的见解。方法:通过PubMed、Cochrane图书馆和专业协会网站进行系统搜索。纳入了2000年至2024年12月期间发表的所有英文指南,这些指南来自专业肿瘤学会,涉及成年癌症幸存者的CRF管理。从筛选的524篇参考文献中,来自8个专业学会的11篇指南符合纳入标准并进行了分析。使用研究和评估指南评估II (AGREE II)标准评估指南的质量。建议、其证据强度和建议强度被提取并标准化到建议分级评估、制定和评价(GRADE)框架中。筛选、分级和提取过程由两名审稿人独立完成。结果:11份指南的质量为高3份(27%),中7份(64%),差1份(9%)。基于中等水平的证据,所有医疗保健提供者应在每位患者就诊时对CRF进行筛查,如果筛查呈阳性,则转诊给适当的专业人员,使用几种经过验证的工具之一进行进一步评估。基于适度证据的强烈建议是锻炼。特别建议进行低到中等强度的有氧和阻力训练,每周三次,持续12周。指南一贯强烈推荐CBT(中度证据)和心理治疗(可变证据)。推荐CBT,特别是结构化的应对策略或基于网络的交付。指南谨慎地推荐身心干预,如瑜伽、太极和气功,基于不同的证据和推荐强度。教育和咨询(特别是与抑郁相关的疲劳)主要基于专家共识,而不是强有力的临床试验。个别患者可考虑其他选择,但没有强有力的证据支持。结论:本指南分析表明,在生存护理期间继续进行CRF筛查得到广泛支持,然后在确定疲劳时评估影响因素。运动,特别是低到中等强度的有氧和抗阻训练,以及认知行为疗法一直被推荐为有效的干预措施。心理教育和咨询也是有益的,特别是对于与心理健康状况有关的疲劳。由于证据不足和副作用,不建议使用药物治疗。对癌症幸存者的启示:考虑到有效的非药物干预措施的可用性,鼓励癌症幸存者报告持续的疲劳并寻求支持性治疗。
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引用次数: 0
Advancing global pediatric cancer survivorship care: barriers, facilitators, and implementation strategies. 推进全球儿童癌症生存护理:障碍、促进因素和实施策略。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-19 DOI: 10.1007/s11764-025-01958-3
Nicholas B George, Sara Malone, Amela Sijecic, Grace Cross, Melissa Martos, David Noyd, Lisa M Force, Nickhill Bhakta, Matthew J Ehrhardt, Maura M Kepper

Background: As more children with cancer experience improved treatment outcomes across the world, challenges arise with ongoing care needs due to a higher risk of mortality and chronic health conditions compared to the general population. Addressing global pediatric cancer survivorship care, especially in low- and middle-income countries (LMICs), is of growing importance. The current study used the Consolidated Framework for Implementation Research (CFIR) and the Expert Recommendations for Implementing Change (ERIC) to examine the barriers, facilitators, and strategies for implementing childhood cancer survivorship care in LMICs.

Methods: Using a larger review (PROSPERO registration CRD42021242548), a total of 8,456 articles were considered. The search identified nine eligible articles mentioning determinants of survivorship care across LMICs. Data were extracted from these articles using the CFIR domains of outer setting, inner setting, and individuals. Assigned CFIR constructs were then paired with ERIC strategies using the CFIR-ERIC matching tool.

Results: The nine studies were published between 2003 and 2020, representing the following countries: India, Brazil, Turkey, China, and Thailand. Inner setting barriers included lack of available resources-funding, space, materials, and guidelines. Outer setting barriers were related to financing, policies, and laws. Individual patient barriers reported were low health literacy, distance to care centers, and low prioritization of follow-up. No common facilitators were noted. The most feasible ERIC strategies for the barriers identified were accessing new funding, developing and distributing educational materials, developing resource-sharing agreements, and conducting local survivorship care needs assessments.

Conclusions: There are limited existing data evaluating childhood cancer survivorship care barriers in LMICs. Of the studies we identified, low resource availability was a frequently reported barrier. As accessing funding can be difficult, resource sharing of contextually adapted guidelines and educational materials can serve as an implementation strategy to improve survivorship care globally.

Implications for cancer survivors: Enhancement of research efforts in resource-limited settings will address key knowledge gaps critical for implementation of global survivorship care and equity throughout the cancer journey.

背景:随着世界各地越来越多的癌症儿童的治疗效果得到改善,与普通人群相比,由于死亡率和慢性健康状况的风险更高,因此持续的护理需求也面临挑战。解决全球儿童癌症生存护理问题,特别是在低收入和中等收入国家(LMICs),变得越来越重要。目前的研究使用实施研究综合框架(CFIR)和实施变革专家建议(ERIC)来检查中低收入国家实施儿童癌症生存护理的障碍、促进因素和策略。方法:采用一项更大的综述(PROSPERO注册号CRD42021242548),共纳入8,456篇文章。搜索确定了九篇符合条件的文章,提到了中低收入国家生存护理的决定因素。使用外部环境、内部环境和个体的CFIR域从这些文章中提取数据。然后使用CFIR-ERIC匹配工具将指定的CFIR结构与ERIC策略配对。结果:这9项研究发表于2003年至2020年之间,分别代表了以下国家:印度、巴西、土耳其、中国和泰国。内部设置障碍包括缺乏可用资源——资金、空间、材料和指导方针。外部设置障碍涉及资金、政策、法律等方面。个别患者的障碍报告是低健康素养,距离护理中心,和低优先级的随访。没有注意到共同的推动者。针对已确定的障碍,最可行的ERIC策略是获得新的资金,开发和分发教育材料,制定资源共享协议,以及进行当地幸存者护理需求评估。结论:评估中低收入国家儿童癌症生存护理障碍的现有数据有限。在我们确定的研究中,低资源可用性是一个经常被报道的障碍。由于获得资金可能很困难,因时制宜的指南和教育材料的资源共享可以作为改善全球幸存者护理的实施战略。对癌症幸存者的影响:在资源有限的环境中加强研究工作将解决关键的知识差距,这对于在整个癌症旅程中实施全球幸存者护理和公平至关重要。
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引用次数: 0
Longitudinal health-related quality of life profiles in esophageal cancer: insights from a nationwide prospective observational cohort study. 食管癌患者的纵向健康相关生活质量概况:来自全国前瞻性观察队列研究的见解
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-19 DOI: 10.1007/s11764-026-01968-9
Esther Deuning-Smit, Julien A M Vos, Ehsan Motazedi, Ellen Engelhardt, Shosha H M Peersman, Cecile V Baartman, Annemarie M J Braamse, Monique Borremans-Simons, Merlijn Hutteman, Ewout A Kouwenhoven, Sjoerd M Lagarde, Grard A P Nieuwenhuijzen, Jelle P Ruurda, Marije Slingerland, Fabiola Müller, Hanneke van Laarhoven, Pieter Coenen

Purpose: Identifying patients with similar health-related quality of life (HRQoL) recovery patterns can guide more effective disease management. This study aimed to identify cross-sectional and longitudinal HRQoL profiles in esophageal cancer patients, and to examine associations with demographic and clinical characteristics.

Methods: Longitudinal data from the Prospective Observational Cohort Study of Esophageal-gastric cancer Patients (POCOP) were analyzed. Patients treated with chemoradiation (CRT), with/without surgery, were followed for 12 months post-treatment. HRQoL was measured pre-treatment, at 6- and 12-months using validated questionnaires (i.e., EORTC QLQ-C30, QLQ-OG25, and HADS). Latent Profile and Latent Transition analyses were used to identify cross-sectional and longitudinal profiles, respectively. Regression analyses explored their associations with demographic and clinical characteristics.

Results: Of the 605 patients (mean age: 66.6 (SD: 8.0) years), most were male (82%) and had undergone surgery (73%). At each time point, two cross-sectional HRQoL profiles were identified: one with relatively high HRQoL (78-84%) and low HRQoL (16-22%). Both profiles showed significant impairments compared to population norms. Longitudinal analyses revealed five distinct HRQoL profiles: stable-high (65%), stable-low (5%), improving (10%), deteriorating (14%), and fluctuating (6%). Poorer HRQoL was associated with female sex and lower body mass index. Fluctuating HRQoL with surgery.

Conclusions: In our cohort, most esophageal cancer patients experienced relatively high or improving HRQoL, but some faced deteriorating or persistent impairments. Patients' sex, BMI, and surgery status may help identify those needing extra support.

Implications for cancer survivors: Recognizing different HRQoL profiles can help manage recovery expectations, and guide more personalized and timely care after treatment.

目的:识别具有相似健康相关生活质量(HRQoL)恢复模式的患者可以指导更有效的疾病管理。本研究旨在确定食管癌患者HRQoL的横断面和纵向特征,并研究其与人口学和临床特征的关系。方法:对来自食管胃癌患者前瞻性观察队列研究(POCOP)的纵向数据进行分析。接受放化疗(CRT)治疗的患者,伴/不伴手术,治疗后随访12个月。采用有效问卷(即EORTC QLQ-C30、QLQ-OG25和HADS)在治疗前、6个月和12个月测量HRQoL。潜在剖面和潜在过渡分析分别用于确定横断面和纵向剖面。回归分析探讨了其与人口统计学和临床特征的关系。结果:605例患者(平均年龄:66.6 (SD: 8.0)岁)中,大多数为男性(82%),接受手术(73%)。在每个时间点,确定了两个横断面HRQoL剖面:一个相对较高的HRQoL(78-84%)和较低的HRQoL(16-22%)。与总体标准相比,这两种情况都显示出显著的损伤。纵向分析揭示了五种不同的HRQoL特征:稳定高(65%)、稳定低(5%)、改善(10%)、恶化(14%)和波动(6%)。较差的HRQoL与女性和较低的身体质量指数有关。手术后HRQoL波动。结论:在我们的队列中,大多数食管癌患者的HRQoL相对较高或有所改善,但一些患者面临恶化或持续的损害。患者的性别、身体质量指数和手术状况可能有助于确定哪些人需要额外的支持。对癌症幸存者的启示:认识不同的HRQoL特征可以帮助管理康复预期,并指导治疗后更个性化和及时的护理。
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引用次数: 0
Cross national comparison of memory function before and after a cancer diagnosis in the United States and England. 美国和英国癌症诊断前后记忆功能的跨国比较。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-17 DOI: 10.1007/s11764-026-01969-8
Ashly C Westrick, Lauren P Wallner, Alden L Gross, Kenneth M Langa, Lindsay C Kobayashi

Objectives: The long-term memory aging of middle-aged and older cancer survivors is not fully understood and is largely limited to the United States (US) context. We compared long-term memory trajectories before and after an incident cancer diagnosis with the memory trajectories of similarly aged cancer-free adults in the US and England.

Methods: Incident cancer diagnosis and memory (immediate and delayed recall) were assessed during biennial interviews in the US Health and Retirement Study (HRS; n = 13,037) and the English Longitudinal Study of Ageing (ELSA; n = 8,579) from 2002 to 2018. Within country, multivariable adjusted linear mixed-effects models estimated the standardized memory trajectories in participants with and without cancer.

Results: Prior to diagnosis, cancer survivors had a memory advantage compared to cancer-free individuals, within each country (difference for cancer survivors in the US: 0.10 SD units [95% CI: 0.05, 0.14] and in England: 0.14 SD units [95% CI: 0.07, 0.20]). Cancer survivors in the US experienced an acute decline in memory function immediately following diagnosis (-0.08 SD units; 95% CI: -0.11, -0.04), which was not experienced by cancer survivors in England (0.01 SD units; 95% CI: -0.04, 0.07). Long-term post-diagnosis memory trajectories were similar for cancer survivors and cancer-free participants alike in both countries.

Conclusion: The acute decline in memory function associated with a new cancer diagnosis among cancer survivors in the US, but not England, warrants future studies to investigate explanations for this cross-national difference, such as differences in healthcare systems and treatment.

Implications for cancer survivors: Results can generate hypotheses to identify contextual risk factors to improve cognitive aging of cancer survivors.

目的:中老年癌症幸存者的长期记忆老化尚不完全清楚,并且主要局限于美国。我们比较了癌症诊断前后的长期记忆轨迹与美国和英国年龄相仿的无癌症成年人的记忆轨迹。方法:2002年至2018年,在美国健康与退休研究(HRS; n = 13037)和英国老龄化纵向研究(ELSA; n = 8579)的两年一次的访谈中,对癌症诊断和记忆(即时和延迟回忆)进行评估。在国内,多变量调整的线性混合效应模型估计了有和没有癌症的参与者的标准化记忆轨迹。结果:在诊断之前,在每个国家,癌症幸存者与无癌症个体相比具有记忆优势(美国癌症幸存者的差异为0.10 SD单位[95% CI: 0.05, 0.14],英国为0.14 SD单位[95% CI: 0.07, 0.20])。美国的癌症幸存者在诊断后立即经历了记忆功能的急性下降(-0.08 SD单位;95% CI: -0.11, -0.04),而英国的癌症幸存者没有经历过这种情况(0.01 SD单位;95% CI: -0.04, 0.07)。在这两个国家,癌症幸存者和无癌症参与者的长期诊断后记忆轨迹相似。结论:在美国的癌症幸存者中,记忆功能的急性衰退与新的癌症诊断有关,而不是英国,值得未来的研究来调查这种跨国差异的解释,比如医疗体系和治疗的差异。对癌症幸存者的影响:结果可以产生假设,以确定环境危险因素,以改善癌症幸存者的认知衰老。
{"title":"Cross national comparison of memory function before and after a cancer diagnosis in the United States and England.","authors":"Ashly C Westrick, Lauren P Wallner, Alden L Gross, Kenneth M Langa, Lindsay C Kobayashi","doi":"10.1007/s11764-026-01969-8","DOIUrl":"https://doi.org/10.1007/s11764-026-01969-8","url":null,"abstract":"<p><strong>Objectives: </strong>The long-term memory aging of middle-aged and older cancer survivors is not fully understood and is largely limited to the United States (US) context. We compared long-term memory trajectories before and after an incident cancer diagnosis with the memory trajectories of similarly aged cancer-free adults in the US and England.</p><p><strong>Methods: </strong>Incident cancer diagnosis and memory (immediate and delayed recall) were assessed during biennial interviews in the US Health and Retirement Study (HRS; n = 13,037) and the English Longitudinal Study of Ageing (ELSA; n = 8,579) from 2002 to 2018. Within country, multivariable adjusted linear mixed-effects models estimated the standardized memory trajectories in participants with and without cancer.</p><p><strong>Results: </strong>Prior to diagnosis, cancer survivors had a memory advantage compared to cancer-free individuals, within each country (difference for cancer survivors in the US: 0.10 SD units [95% CI: 0.05, 0.14] and in England: 0.14 SD units [95% CI: 0.07, 0.20]). Cancer survivors in the US experienced an acute decline in memory function immediately following diagnosis (-0.08 SD units; 95% CI: -0.11, -0.04), which was not experienced by cancer survivors in England (0.01 SD units; 95% CI: -0.04, 0.07). Long-term post-diagnosis memory trajectories were similar for cancer survivors and cancer-free participants alike in both countries.</p><p><strong>Conclusion: </strong>The acute decline in memory function associated with a new cancer diagnosis among cancer survivors in the US, but not England, warrants future studies to investigate explanations for this cross-national difference, such as differences in healthcare systems and treatment.</p><p><strong>Implications for cancer survivors: </strong>Results can generate hypotheses to identify contextual risk factors to improve cognitive aging of cancer survivors.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145989407","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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
Disability experiences and quality of life in adolescent and young adult cancer survivors: a scoping review. 青少年和青年癌症幸存者的残疾经历和生活质量:范围综述。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-16 DOI: 10.1007/s11764-025-01964-5
Lindsey R Vongthavaravat, Leeah M Chang, Natasha Z R Steele, Amy Roder McArthur

Purpose: This scoping literature review explored disability-related experiences among adolescent and young adult (AYA) cancer survivors [ages 15-39], including their knowledge of the Americans with Disabilities Act (ADA) and awareness of associated rights.

Methods: Seven databases (PubMed, Academic Search Complete, MEDLINE, ERIC, SocINDEX with Full Text, Health Source: Nursing/Academic Edition, and APA PsychINFO) were searched for U.S. based literature (2010-2025) using relevant MeSH terms and boolean operators (e.g., "cancer surviv*" AND ("disab*" OR "impair*") AND ("young" OR "adolescent" OR "AYA"). Included studies focused on employment-related discrimination, cancer-related disclosure, psychosocial outcomes, and survivors' unmet disability-related needs. A narrative synthesis summarized key themes, with quantitative results tabulated and qualitative findings categorized.

Results: A total of 715 articles were screened, with 21 studies included for analysis. These studies highlight key gaps in legal awareness and support for adolescent and young adult (AYA) cancer survivors. Three main themes were identified: (1) employment, education, and workplace barriers, (2) legal, policy, and system-level barriers, and (3) psychosocial and identity-related challenges.

Conclusion: AYA cancer survivors encounter barriers in daily life and navigate changes to their social identity that could be described as disability based on existing legal and social definitions. Despite growing research capturing the experiences of AYA survivors, there remains limited research addressing survivorship in relation to disability.

Implications for cancer survivors: Current survivorship literature lacks discussion of disability experiences of survivors and relevant disability support. Addressing this gap could better document the lived experiences of AYA survivors and design supportive services informed by disability law and policy.

目的:本文献综述探讨了青少年和年轻成人(AYA)癌症幸存者[15-39岁]的残疾相关经历,包括他们对《美国残疾人法案》(ADA)的了解以及对相关权利的认识。方法:使用相关MeSH术语和布尔运算符(如“癌症存活*”和(“残疾*”或“损害*”)和(“年轻”或“青春期”或“AYA”)对七个数据库(PubMed、Academic Search Complete、MEDLINE、ERIC、SocINDEX with全文、Health Source: Nursing/Academic Edition和APA PsychINFO)检索美国文献(2010-2025)。纳入的研究侧重于与就业有关的歧视、与癌症有关的信息披露、社会心理结果和幸存者未满足的残疾相关需求。叙述综合总结了关键主题,定量结果表和定性发现分类。结果:共筛选715篇文献,其中21篇纳入分析。这些研究突出了青少年和青年癌症幸存者在法律意识和支持方面的主要差距。确定了三个主要主题:(1)就业、教育和工作场所障碍;(2)法律、政策和制度层面障碍;(3)社会心理和身份相关挑战。结论:AYA癌症幸存者在日常生活中遇到障碍,并且根据现有的法律和社会定义,他们的社会身份可以被描述为残疾。尽管越来越多的研究捕捉到AYA幸存者的经历,但关于幸存者与残疾的关系的研究仍然有限。对癌症幸存者的启示:目前的幸存者文献缺乏对幸存者残疾经历和相关残疾支持的讨论。解决这一差距可以更好地记录AYA幸存者的生活经历,并根据残疾法律和政策设计支持性服务。
{"title":"Disability experiences and quality of life in adolescent and young adult cancer survivors: a scoping review.","authors":"Lindsey R Vongthavaravat, Leeah M Chang, Natasha Z R Steele, Amy Roder McArthur","doi":"10.1007/s11764-025-01964-5","DOIUrl":"https://doi.org/10.1007/s11764-025-01964-5","url":null,"abstract":"<p><strong>Purpose: </strong>This scoping literature review explored disability-related experiences among adolescent and young adult (AYA) cancer survivors [ages 15-39], including their knowledge of the Americans with Disabilities Act (ADA) and awareness of associated rights.</p><p><strong>Methods: </strong>Seven databases (PubMed, Academic Search Complete, MEDLINE, ERIC, SocINDEX with Full Text, Health Source: Nursing/Academic Edition, and APA PsychINFO) were searched for U.S. based literature (2010-2025) using relevant MeSH terms and boolean operators (e.g., \"cancer surviv*\" AND (\"disab*\" OR \"impair*\") AND (\"young\" OR \"adolescent\" OR \"AYA\"). Included studies focused on employment-related discrimination, cancer-related disclosure, psychosocial outcomes, and survivors' unmet disability-related needs. A narrative synthesis summarized key themes, with quantitative results tabulated and qualitative findings categorized.</p><p><strong>Results: </strong>A total of 715 articles were screened, with 21 studies included for analysis. These studies highlight key gaps in legal awareness and support for adolescent and young adult (AYA) cancer survivors. Three main themes were identified: (1) employment, education, and workplace barriers, (2) legal, policy, and system-level barriers, and (3) psychosocial and identity-related challenges.</p><p><strong>Conclusion: </strong>AYA cancer survivors encounter barriers in daily life and navigate changes to their social identity that could be described as disability based on existing legal and social definitions. Despite growing research capturing the experiences of AYA survivors, there remains limited research addressing survivorship in relation to disability.</p><p><strong>Implications for cancer survivors: </strong>Current survivorship literature lacks discussion of disability experiences of survivors and relevant disability support. Addressing this gap could better document the lived experiences of AYA survivors and design supportive services informed by disability law and policy.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145988226","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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
Racial disparities in the association between adverse childhood experiences and history of self-reported depression among cancer survivors. 癌症幸存者不良童年经历与自述抑郁史之间的种族差异
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-16 DOI: 10.1007/s11764-025-01965-4
Vincent J Colucciello, Oluwole A Babatunde, Katherine Gonzalez, Ngozi Adaralegbe, Melanie S Jefferson, Swann A Adams, Chanita Hughes Halbert, Frank Clark, Anusuiya Nagar, Nosayaba Osazuwa-Peters, Eric Adjei Boakye

Objective: This study aimed to assess the association between the number of adverse childhood experiences (ACEs) and the history of depression among cancer survivors by race.

Methods: This study was a cross-sectional analysis of the 2020 Behavioral Risk Factor Surveillance System among 22,292 cancer survivors. The number of ACE experienced (zero, one, two-three, ≥ four) included questions assessing exposure to physical, emotional, and sexual household member substance misuse, incarceration, mental illness, parental divorce, or witnessing intimate partner violence before age 18 years. The outcome is self-reported history of depression (yes/no). Three weighted multivariable logistic regression models were used to examine the association between ACE and depression for each race group: non-Hispanic White (NHW), non-Hispanic Black (NHB), and Hispanics.

Results: In this sample of cancer survivors, 41%, 22%, 21%, and 16% reported having experienced zero, one, two-three, and ≥ 4 ACEs, respectively. In the adjusted models, among NHW survivors, those who experienced ≥ 4 ACEs (aOR 4.20; 95% CI 3.32-5.32) had higher odds of depression diagnosis compared with those with zero ACEs. Among NHB survivors, those who experienced ≥ 4 ACEs had higher odds of depression diagnosis (aOR 2.98; 95% CI 1.45-6.14) compared with those with zero ACEs. Similarly, among Hispanic survivors, those who experienced ≥ 4 ACEs had higher odds of depression diagnosis (aOR 10.74; 95% CI 5.01-23.00) compared with those with zero ACEs.

Conclusion: Individuals with ACEs may constitute a key group for targeted prevention efforts to mitigate the risk of depression in cancer survivors.

Implications for cancer survivors: Development of personalized and targeted screening methods for patients diagnosed with cancer who have experienced adverse childhood experiences and depression is critical to improving their long-term well-being.

目的:本研究旨在评估不同种族癌症幸存者童年不良经历(ace)数量与抑郁史之间的关系。方法:本研究对22292名癌症幸存者的2020年行为风险因素监测系统进行了横断面分析。ACE经历的数量(0、1、2 - 3、≥4)包括评估在18岁之前暴露于身体、情感和性家庭成员药物滥用、监禁、精神疾病、父母离婚或目睹亲密伴侣暴力的问题。结果是自我报告的抑郁史(是/否)。使用三个加权多变量logistic回归模型来检验每个种族组(非西班牙裔白人(NHW)、非西班牙裔黑人(NHB)和西班牙裔)ACE与抑郁症之间的关系。结果:在该癌症幸存者样本中,分别有41%、22%、21%和16%报告经历过0次、1次、2 - 3次和≥4次ace。在调整后的模型中,在NHW幸存者中,经历≥4次ace的患者(aOR 4.20; 95% CI 3.32-5.32)与无ace的患者相比,患抑郁症的几率更高。在NHB幸存者中,经历≥4次不良经历的患者与无不良经历的患者相比,抑郁诊断的几率更高(aOR 2.98; 95% CI 1.45-6.14)。同样,在西班牙裔幸存者中,经历≥4次ace的患者与没有经历过ace的患者相比,抑郁症诊断的几率更高(aOR 10.74; 95% CI 5.01-23.00)。结论:ace患者可能是有针对性的预防措施,以减轻癌症幸存者抑郁风险的关键群体。对癌症幸存者的启示:为患有癌症的患者开发个性化和有针对性的筛查方法,这些患者经历过不良的童年经历和抑郁症,对改善他们的长期健康至关重要。
{"title":"Racial disparities in the association between adverse childhood experiences and history of self-reported depression among cancer survivors.","authors":"Vincent J Colucciello, Oluwole A Babatunde, Katherine Gonzalez, Ngozi Adaralegbe, Melanie S Jefferson, Swann A Adams, Chanita Hughes Halbert, Frank Clark, Anusuiya Nagar, Nosayaba Osazuwa-Peters, Eric Adjei Boakye","doi":"10.1007/s11764-025-01965-4","DOIUrl":"https://doi.org/10.1007/s11764-025-01965-4","url":null,"abstract":"<p><strong>Objective: </strong>This study aimed to assess the association between the number of adverse childhood experiences (ACEs) and the history of depression among cancer survivors by race.</p><p><strong>Methods: </strong>This study was a cross-sectional analysis of the 2020 Behavioral Risk Factor Surveillance System among 22,292 cancer survivors. The number of ACE experienced (zero, one, two-three, ≥ four) included questions assessing exposure to physical, emotional, and sexual household member substance misuse, incarceration, mental illness, parental divorce, or witnessing intimate partner violence before age 18 years. The outcome is self-reported history of depression (yes/no). Three weighted multivariable logistic regression models were used to examine the association between ACE and depression for each race group: non-Hispanic White (NHW), non-Hispanic Black (NHB), and Hispanics.</p><p><strong>Results: </strong>In this sample of cancer survivors, 41%, 22%, 21%, and 16% reported having experienced zero, one, two-three, and ≥ 4 ACEs, respectively. In the adjusted models, among NHW survivors, those who experienced ≥ 4 ACEs (aOR 4.20; 95% CI 3.32-5.32) had higher odds of depression diagnosis compared with those with zero ACEs. Among NHB survivors, those who experienced ≥ 4 ACEs had higher odds of depression diagnosis (aOR 2.98; 95% CI 1.45-6.14) compared with those with zero ACEs. Similarly, among Hispanic survivors, those who experienced ≥ 4 ACEs had higher odds of depression diagnosis (aOR 10.74; 95% CI 5.01-23.00) compared with those with zero ACEs.</p><p><strong>Conclusion: </strong>Individuals with ACEs may constitute a key group for targeted prevention efforts to mitigate the risk of depression in cancer survivors.</p><p><strong>Implications for cancer survivors: </strong>Development of personalized and targeted screening methods for patients diagnosed with cancer who have experienced adverse childhood experiences and depression is critical to improving their long-term well-being.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145989112","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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
Becoming unemployed after a cancer diagnosis: associated characteristics and its impact on daily life. 癌症诊断后失业:相关特征及其对日常生活的影响。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-14 DOI: 10.1007/s11764-025-01961-8
F van Ommen, S F A Duijts, A G E M de Boer, V Engelen, M F M de Jong, M B de Ruiter, M A Greidanus, P Coenen

Purpose: This study compared characteristics of cancer survivors who became unemployed after diagnosis with those who remained employed and evaluated the association between employment status and the impact on daily life.

Methods: A cross-sectional online survey was conducted among adult cancer survivors employed at diagnosis. Participants were categorized based on employment status post-diagnosis. Univariate and multivariate binomial generalized linear models and multinomial logistic regression analyses were applied.

Results: Among 2576 cancer survivors (mean age: 53.4 years, 77% female, 62% 0-5 years post-diagnosis), 1704 (66%) remained employed, while 872 (34%) became unemployed. Becoming unemployed was associated with older age [OR; 95% CI, 1.02; 1.01-1.03], low [OR; 95% CI, 2.43; 1.05-3.45] or intermediate education [OR; 95% CI, 1.60; 1.33-1.93], and indicating (probably) not getting better [OR; 95% CI, 3.94; 3.05-5.07] or having chronic cancer [OR; 95% CI, 1.68; 1.25-2.25]. Prostate cancer survivors and those diagnosed ≤5 years prior were less likely to become unemployed than those with other types of cancer or those diagnosed longer ago. Becoming unemployed was associated with a negative influence on psychological [OR; 95% CI, 2.22; 1.80-2.74] and physical well-being [OR; 95% CI, 1.96; 1.61-2.38]. Those who became unemployed were more likely than those who remained employed to perceive that financial consequences negatively influenced multiple aspects of daily life, including family and social relationships, participation in sports, hobbies, and leisure activities, for themselves as well as for their partners and children.

Conclusion: Unemployment was disproportionately prevalent among older, less-educated individuals and individuals with advanced cancer and was associated with declines in personal and family well-being due to experienced financial consequences.

Implications for cancer survivors: Identifying cancer survivors vulnerable to unemployment can guide timely, targeted support to help them maintain employment if desired. The observed link between unemployment and daily life emphasizes the importance of addressing employment issues within survivorship care.

目的:本研究比较了癌症幸存者在诊断后失业的特征,并评估了就业状况与日常生活影响之间的关系。方法:在诊断时对成年癌症幸存者进行横断面在线调查。参与者根据诊断后的就业状况进行分类。采用单变量和多变量二项广义线性模型和多项逻辑回归分析。结果:在2576名癌症幸存者中(平均年龄:53.4岁,77%为女性,62%为诊断后0-5年),1704名(66%)仍有工作,872名(34%)失业。失业与年龄增长有关[OR;95% ci, 1.02;1.01-1.03], low [OR;95% ci, 2.43;1.05-3.45]或中等教育[or;95% ci, 1.60;1.33-1.93],表示(可能)没有好转[OR;95% ci, 3.94;[3.05-5.07]或患有慢性癌症[or;95% ci, 1.68;1.25 - -2.25)。前列腺癌幸存者和确诊≤5年前的患者失业的可能性低于其他类型癌症患者或确诊时间更早的患者。失业会对心理产生负面影响[OR;95% ci, 2.22;[1.80-2.74]和身体健康[OR;95% ci, 1.96;1.61 - -2.38)。失业者比仍有工作的人更有可能认识到,经济后果对他们自己以及他们的伴侣和子女日常生活的多个方面产生了负面影响,包括家庭和社会关系、体育活动、爱好和休闲活动的参与。结论:失业在老年人、受教育程度较低的个体和晚期癌症患者中尤为普遍,并且由于经历了经济后果,失业与个人和家庭幸福感的下降有关。对癌症幸存者的启示:确定易失业的癌症幸存者可以指导及时、有针对性的支持,帮助他们在需要的情况下维持就业。观察到的失业与日常生活之间的联系强调了在幸存者护理中解决就业问题的重要性。
{"title":"Becoming unemployed after a cancer diagnosis: associated characteristics and its impact on daily life.","authors":"F van Ommen, S F A Duijts, A G E M de Boer, V Engelen, M F M de Jong, M B de Ruiter, M A Greidanus, P Coenen","doi":"10.1007/s11764-025-01961-8","DOIUrl":"https://doi.org/10.1007/s11764-025-01961-8","url":null,"abstract":"<p><strong>Purpose: </strong>This study compared characteristics of cancer survivors who became unemployed after diagnosis with those who remained employed and evaluated the association between employment status and the impact on daily life.</p><p><strong>Methods: </strong>A cross-sectional online survey was conducted among adult cancer survivors employed at diagnosis. Participants were categorized based on employment status post-diagnosis. Univariate and multivariate binomial generalized linear models and multinomial logistic regression analyses were applied.</p><p><strong>Results: </strong>Among 2576 cancer survivors (mean age: 53.4 years, 77% female, 62% 0-5 years post-diagnosis), 1704 (66%) remained employed, while 872 (34%) became unemployed. Becoming unemployed was associated with older age [OR; 95% CI, 1.02; 1.01-1.03], low [OR; 95% CI, 2.43; 1.05-3.45] or intermediate education [OR; 95% CI, 1.60; 1.33-1.93], and indicating (probably) not getting better [OR; 95% CI, 3.94; 3.05-5.07] or having chronic cancer [OR; 95% CI, 1.68; 1.25-2.25]. Prostate cancer survivors and those diagnosed ≤5 years prior were less likely to become unemployed than those with other types of cancer or those diagnosed longer ago. Becoming unemployed was associated with a negative influence on psychological [OR; 95% CI, 2.22; 1.80-2.74] and physical well-being [OR; 95% CI, 1.96; 1.61-2.38]. Those who became unemployed were more likely than those who remained employed to perceive that financial consequences negatively influenced multiple aspects of daily life, including family and social relationships, participation in sports, hobbies, and leisure activities, for themselves as well as for their partners and children.</p><p><strong>Conclusion: </strong>Unemployment was disproportionately prevalent among older, less-educated individuals and individuals with advanced cancer and was associated with declines in personal and family well-being due to experienced financial consequences.</p><p><strong>Implications for cancer survivors: </strong>Identifying cancer survivors vulnerable to unemployment can guide timely, targeted support to help them maintain employment if desired. The observed link between unemployment and daily life emphasizes the importance of addressing employment issues within survivorship care.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":""},"PeriodicalIF":2.9,"publicationDate":"2026-01-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145966285","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"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
Breast cancer survivor's sexual health unmet supportive care needs: a mixed-methods study. 乳腺癌幸存者的性健康未满足支持性护理需求:一项混合方法研究。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-13 DOI: 10.1007/s11764-025-01926-x
Diana Ferreira, Ana Luísa Quinta-Gomes, Sonia Pieramico, Elisabete Weiderpass, Rui Santana, Gerhard Andersson, Cristina Mendes-Santos

Purpose: Breast cancer is one of the most common malignancies affecting women worldwide. Despite advances in early detection and treatment improving long-term survival rates, the sexual health needs of breast cancer survivors (BCS) remain overlooked due to the predominant focus on biomedical outcomes. In Portugal, as in many other countries, these needs are frequently neglected, despite evidence showing their significant impact on the quality of life. This study aims to explore the unmet sexual health needs of BCS in Portugal, identify barriers to addressing these issues in oncological settings, and outline key requirements for developing effective interventions to improve their quality of life.

Methods: A mixed-methods design was used, combining quantitative data from 336 BCS, assessed using the Female Sexual Function Index (FSFI) and EORTC QLQ-C30/BR23 questionnaires, with qualitative data from semi-structured interviews with 11 survivors. Interviews explored unmet sexual health needs and satisfaction with oncology support services. Data were analyzed descriptively and thematically.

Results: Quantitative findings showed low sexual functioning, particularly in desire and arousal, and high levels of sexual pain. Emotional functioning scored lowest in quality-of-life assessments, with fatigue, insomnia, and pain as prevalent symptoms. Qualitative results highlighted unmet needs, including a lack of sexuality-related information, body image concerns, limited psychosexual support, and insufficient partner involvement.

Conclusions: Participants reported poor sexual functioning and quality of life, with critical sexual health needs unaddressed in care.

Implications for cancer survivors: Integrating tailored sexual health support-including psychoeducational and therapeutic interventions-into oncology services may enhance survivors' emotional well-being, relational intimacy, and overall quality of life.

目的:乳腺癌是世界范围内影响女性最常见的恶性肿瘤之一。尽管在早期发现和治疗方面取得了进步,提高了长期存活率,但由于主要关注生物医学结果,乳腺癌幸存者(BCS)的性健康需求仍然被忽视。在葡萄牙,象在许多其他国家一样,这些需要经常被忽视,尽管有证据表明它们对生活质量有重大影响。本研究旨在探讨葡萄牙BCS未满足的性健康需求,确定在肿瘤环境中解决这些问题的障碍,并概述制定有效干预措施以改善其生活质量的关键要求。方法:采用混合方法设计,采用女性性功能指数(FSFI)和EORTC QLQ-C30/BR23问卷评估336例BCS的定量数据,以及对11例幸存者进行半结构化访谈的定性数据。访谈探讨了未满足的性健康需求和对肿瘤支持服务的满意度。对数据进行描述性和主题性分析。结果:定量研究结果显示性功能低下,尤其是性欲和性唤起,性疼痛程度高。情绪功能在生活质量评估中得分最低,普遍症状为疲劳、失眠和疼痛。定性结果强调了未满足的需求,包括缺乏与性有关的信息、对身体形象的担忧、有限的性心理支持和伴侣参与不足。结论:参与者报告性功能和生活质量差,关键的性健康需求在护理中未得到解决。对癌症幸存者的启示:将量身定制的性健康支持——包括心理教育和治疗干预——整合到肿瘤服务中,可能会提高幸存者的情感健康、关系亲密和整体生活质量。
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引用次数: 0
Mapping advanced and metastatic cancer survivorship research in Australia: a systematic scoping review. 绘制晚期和转移性癌症在澳大利亚的生存研究:一个系统的范围审查。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-09 DOI: 10.1007/s11764-025-01937-8
Andrea L Smith, Philip Ly, Holly Keogh, Isabel Rewais, Molly Valencour, Qian Wang, Nicolas H Hart, Carolyn Mazariego, Larissa Nekhlyudov

Purpose: To map advanced and metastatic cancer survivorship research in Australia and characterize studies according to the priority research themes outlined by the US National Cancer Institute (NCI).

Methods: Systematic scoping review. MEDLINE, PsycINFO, Embase and CINAHL were searched from inception to December 2024 for cancer survivorship studies conducted in Australia, with studies reporting data for people with advanced or metastatic cancer classified using NCI's priority research themes.

Results: We identified 483 studies, of which 72 (14.9%) recruited and reported data for participants with advanced or metastatic cancer, focusing on: psychosocial research (51.4%); healthcare delivery (16.7%); health behaviors (12.5%); symptom management (11.1%); and epidemiology and surveillance (8.3%). Most were conducted within individual Australian states (72.2%) and involved multiple cancer types (41.7%). Study designs included qualitative (44.4%), cross-sectional (34.7%), cohort (16.7%), case-control (1.4%), case report (1.4%) and mixed methods (1.4%). Forty-two tumor-specific studies were identified including breast (33.3%), hematological (21.4%); prostate (11.9%); bowel/colorectal (11.9%), gynecological (9.5%), melanoma (7.1%), head and neck (2.4%), and lung (2.4%) cancers. Nearly a quarter of studies recruited participants via cancer registries (22.2%).

Conclusions: Few cancer survivorship studies included people with advanced or metastatic cancer in Australia. We offer six recommendations to support funders, clinicians, policymakers, and researchers to improve representation of advanced or metastatic cancer survivors in survivorship research programs. Similar efforts in other countries are needed.

Implications for cancer survivors: Increasing numbers of people are living long-term with advanced or metastatic cancer. The purposeful inclusion of these people in cancer survivorship research and care programs will improve health outcomes.

目的:绘制澳大利亚晚期和转移性癌症生存研究,并根据美国国家癌症研究所(NCI)概述的优先研究主题对研究进行表征。方法:系统范围审查。MEDLINE, PsycINFO, Embase和CINAHL检索了从成立到2024年12月在澳大利亚进行的癌症生存研究,研究报告了使用NCI优先研究主题分类的晚期或转移性癌症患者的数据。结果:我们确定了483项研究,其中72项(14.9%)招募并报告了晚期或转移性癌症患者的数据,重点是:社会心理研究(51.4%);医疗保健服务(16.7%);健康行为(12.5%);症状管理(11.1%);流行病学和监测(8.3%)。大多数研究是在澳大利亚各州进行的(72.2%),涉及多种癌症类型(41.7%)。研究设计包括定性法(44.4%)、横断面法(34.7%)、队列法(16.7%)、病例对照法(1.4%)、病例报告法(1.4%)和混合法(1.4%)。确定了42项肿瘤特异性研究,包括乳腺(33.3%)、血液学(21.4%);前列腺癌(11.9%);肠癌/结直肠癌(11.9%)、妇科(9.5%)、黑色素瘤(7.1%)、头颈癌(2.4%)和肺癌(2.4%)。近四分之一的研究通过癌症登记处招募参与者(22.2%)。结论:在澳大利亚,很少有癌症生存研究包括晚期或转移性癌症患者。我们提供了六个建议,以支持资助者、临床医生、政策制定者和研究人员在生存研究项目中提高晚期或转移性癌症幸存者的代表性。其他国家也需要类似的努力。对癌症幸存者的启示:越来越多的人长期生活在晚期或转移性癌症中。有目的地将这些人纳入癌症生存研究和护理计划将改善健康结果。
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引用次数: 0
Visualizing Health Related Quality of Life (HRQoL): understanding comprehension of HRQoL graphs in the allogeneic hematopoietic cell transplant setting. 可视化健康相关生活质量(HRQoL):了解同种异体造血细胞移植环境中HRQoL图表的理解。
IF 2.9 2区 医学 Q2 ONCOLOGY Pub Date : 2026-01-09 DOI: 10.1007/s11764-025-01941-y
Rachel Cusatis, Miranda Kapfhammer, Lisa Rein, Aniko Szabo, Sarah Reed-Thryselius, Rachel Phelan, Kristin Bingen, Lyndsey Runaas, Bronwen E Shaw, Kathryn E Flynn

Purpose: As survival improves for allogeneic hematopoietic cell transplant (alloHCT) recipients, discussions about health-related quality of life (HRQoL) become increasingly important. Previous research has suggested best practices for sharing HRQoL data graphically, but not in the alloHCT setting. This study aimed to evaluate comprehension of graphical displays of HRQoL among stakeholders in alloHCT and to make recommendations for displaying clinically concerning HRQoL.

Methods: An online survey assessed comprehension of HRQoL graphs among alloHCT recipients, their caregivers, and care team members. Participants were randomized to see 8 of 32 unique graphs, which varied in how clinically concerning scores were indicated (primary comparison), HRQoL domain, and score pattern. Four comprehension questions followed each graph. Open-ended questions queried for graph design preferences. Qualitative interviews with care team members assessed priorities for using HRQoL graphs in clinical settings.

Results: 190 patients, 38 caregivers, and 18 care team members completed surveys. Median comprehension score was 31/32 across all groups, with wider ranges among patients (5-32) and caregivers (6-32) than care team members (22-32). Threshold line graphs were more likely to be interpreted correctly by adult patients than red circle graphs (OR, 6.07; 95% CI 2.34, 15.8. 78% of participants preferred the threshold design. Qualitative interviews with seven care team members revealed four implementation-related themes: a need for clear guidance, improved communication, integration with existing systems, and impact to patients.

Conclusions: Comprehension of HRQoL graphs was high among all alloHCT stakeholder groups, providing confidence for their use in clinical settings.

Implications for cancer survivors: The findings of this study suggest that HRQoL graphs are comprehensible among key alloHCT stakeholder groups, regardless of health literacy level. Results also show that threshold lines are a preferred and universally understood method for distinguishing clinically concerning HRQoL and that care team members are motivated to use HRQoL graphs with patients.

目的:随着同种异体造血细胞移植(allogenetic hematopoietic cell transplant, alloHCT)受者生存率的提高,有关健康相关生活质量(HRQoL)的讨论变得越来越重要。先前的研究已经提出了以图形方式共享HRQoL数据的最佳实践,但在alloHCT设置中并不适用。本研究旨在评估利益相关者在同种异体hct中对HRQoL图像显示的理解程度,并为临床显示HRQoL提出建议。方法:通过在线调查评估同种异体hct接受者、其护理者和护理团队成员对HRQoL图的理解程度。参与者被随机分配到32个独特图表中的8个,这些图表在临床相关评分的显示方式(初步比较)、HRQoL域和评分模式上有所不同。每个图表后面跟着四个理解题。询问图形设计偏好的开放式问题。与护理团队成员的定性访谈评估了在临床环境中使用HRQoL图表的优先级。结果:190名患者、38名护理人员和18名护理团队成员完成了调查。所有组的中位理解得分为31/32,患者(5-32)和护理人员(6-32)之间的差异大于护理团队成员(22-32)。阈值线形图比红圈图更容易被成年患者正确解释(OR, 6.07; 95% CI 2.34, 15.8)。78%的参与者更喜欢阈值设计。对七名护理团队成员的定性访谈揭示了四个与实施相关的主题:需要明确的指导、改进的沟通、与现有系统的整合以及对患者的影响。结论:所有同种异体hct利益相关者组对HRQoL图的理解程度较高,为其在临床应用提供了信心。对癌症幸存者的影响:本研究的结果表明,无论健康素养水平如何,HRQoL图表在关键的同种异体ct利益相关者群体中都是可理解的。结果还表明,阈值线是一种首选和普遍理解的区分临床有关HRQoL的方法,并且护理团队成员有动力与患者一起使用HRQoL图表。
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引用次数: 0
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Journal of Cancer Survivorship
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