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Advanced Clinical-Based Technologies for Monitoring Physical Function in Breast Cancer Survivors: Scoping Review. 监测乳腺癌幸存者身体功能的先进临床技术:范围综述。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-14 DOI: 10.2196/77894
Mahtab Azhdar, Adalberto Loyola-Sanchez, Amber Wardrop, Martin Ferguson-Pell
<p><strong>Background: </strong>People surviving breast cancer often face long-term impairments in physical function, significantly impacting their quality of life. In recent years, a variety of technologies have been developed to monitor and assess these functions; however, there is no consolidated synthesis linking specific technologies to targeted functional domains and real-world clinical contexts, limiting comparability and translation into practice.</p><p><strong>Objective: </strong>This scoping review aimed to systematically explore and map the use of advanced clinic-based technologies for assessing and monitoring key physical functions, such as balance, muscle strength, and range of motion, among individuals surviving breast cancer. The purpose of this review was not only to identify which technologies have been applied but also to clarify how they are being used, the clinical settings, target physical functions, assessment protocols, and types of outcomes measured. It further summarized the current patterns of use to inform and enhance clinical assessment practices.</p><p><strong>Methods: </strong>A comprehensive literature search was conducted across MEDLINE, Scopus, CINAHL, and Web of Science databases, with no publication date restrictions. Eligible studies included adults with breast cancer assessed using advanced clinic-based technologies to monitor physical function. Screening and selection followed PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The data extraction captured study characteristics, participant demographics, technologies applied, and related outcomes. The extracted data were organized in Covidence and synthesized descriptively to map the types of technologies, assessed functional domains, and application settings across studies.</p><p><strong>Results: </strong>Across the 17 included studies, the participants (N=719; age range between 30 and 75 years) were predominantly female and largely drawn from stage 0 to III breast cancer cohorts; 1 (5.9%) study reported a single male participant, and 2 (11.8%) studies did not specify participant sex. Among the 17 included studies, 11 (64.7%) were published from 2017 onward. Technologies spanned balance platforms (force plates, Technobody-PK 200 WL, Sensory Organization Test; 5/17, 29.4%), isokinetic dynamometry (Biodex systems; 4/17, 23.5%), and range of motion assessment via motion capture (3/17, 17.6%) or digital inclinometers (5/17, 29.4%). Sample sizes per study ranged from 20 to 100 participants (median 43), and follow-up durations varied from 1 session to 6 months.</p><p><strong>Conclusions: </strong>Advanced clinic-based technologies for assessing balance, muscle strength, and range of motion in breast cancer survivors were identified across the literature, including balance platforms, isokinetic dynamometry, digital inclinometers, and markerless motion capture systems. Considerable heterogeneity in devices, outcome reporting, and
背景:乳腺癌患者经常面临身体功能的长期损伤,严重影响其生活质量。近年来,已经开发了各种技术来监测和评估这些功能;然而,目前还没有将特定技术与目标功能域和现实世界临床环境联系起来的综合研究,限制了可比性和转化为实践。目的:本综述旨在系统地探索和绘制先进的临床技术用于评估和监测乳腺癌存活个体的关键身体功能,如平衡、肌肉力量和活动范围。本综述的目的不仅是确定哪些技术已经被应用,而且要澄清它们是如何被使用的、临床环境、目标身体功能、评估方案和测量结果的类型。它进一步总结了目前的使用模式,以告知和加强临床评估实践。方法:在MEDLINE、Scopus、CINAHL和Web of Science数据库中进行全面的文献检索,无发表日期限制。合格的研究包括患有乳腺癌的成年人,使用先进的临床技术来监测身体功能。筛选和选择遵循PRISMA(系统评价和荟萃分析首选报告项目)指南。数据提取包括研究特征、参与者人口统计、应用的技术和相关结果。提取的数据在covid中进行组织,并进行描述性综合,以绘制技术类型、评估的功能领域和跨研究的应用设置。结果:在纳入的17项研究中,参与者(N=719,年龄在30至75岁之间)主要是女性,大部分来自0期至III期乳腺癌队列;1项(5.9%)研究报告了单个男性参与者,2项(11.8%)研究没有明确参与者的性别。在纳入的17项研究中,11项(64.7%)发表于2017年以后。技术跨越平衡平台(力板,Technobody-PK 200 WL,感官组织测试;5/17,29.4%),等速动力学测量(Biodex系统;4/17,23.5%),以及通过运动捕捉(3/17,17.6%)或数字倾斜仪(5/17,29.4%)进行运动范围评估。每项研究的样本量从20到100名参与者(中位数43),随访时间从1个月到6个月不等。结论:在文献中发现了用于评估乳腺癌幸存者平衡、肌肉力量和活动范围的先进临床技术,包括平衡平台、等速动力学测量、数字倾角计和无标记运动捕捉系统。设备、结果报告和研究设计的巨大异质性限制了研究间的直接比较,并阻碍了对任何单一技术的优越性或临床准备性的明确结论。
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引用次数: 0
Adapting Interventions for Home Hospice Caregivers Using Digital Health Innovation. 使用数字健康创新调整家庭临终关怀照护者的干预措施。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-14 DOI: 10.2196/81589
Qing Huang
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引用次数: 0
Explainable AI for Predicting Mortality Risk in Metastatic Cancer: Retrospective Cohort Study Using the Memorial Sloan Kettering-Metastatic Dataset. 可解释的人工智能预测转移性癌症的死亡风险:使用纪念斯隆-凯特林-转移数据集的回顾性队列研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-13 DOI: 10.2196/74196
Polycarp Nalela, Deepthi Rao, Praveen Rao
<p><strong>Background: </strong>Metastatic cancer remains one of the leading causes of cancer-related mortality worldwide. Yet, the prediction of survivability in this population remains limited by heterogeneous clinical presentations and high-dimensional molecular features. Advances in machine learning (ML) provide an opportunity to integrate diverse patient- and tumor-level factors into explainable predictive ML models. Leveraging large real-world datasets and modern ML techniques can enable improved risk stratification and precision oncology.</p><p><strong>Objective: </strong>This study aimed to develop and interpret ML models for predicting overall survival in patients with metastatic cancer using the Memorial Sloan Kettering-Metastatic (MSK-MET) dataset and to identify key prognostic biomarkers through explainable artificial intelligence techniques.</p><p><strong>Methods: </strong>We performed a retrospective analysis of the MSK-MET cohort, comprising 25,775 patients across 27 tumor types. After data cleaning and balancing, 20,338 patients were included. Overall survival was defined as deceased versus living at last follow-up. Five classifiers (extreme gradient boosting [XGBoost], logistic regression, random forest, decision tree, and naive Bayes) were trained using an 80/20 stratified split and optimized via grid search with 5-fold cross-validation. Model performance was assessed using accuracy, area under the curve (AUC), precision, recall, and F<sub>1</sub>-score. Model explainability was achieved using Shapley additive explanations (SHAP). Survival analyses included Kaplan-Meier estimates, Cox proportional hazards models, and an XGBoost-Cox model for time-to-event prediction. The positive predictive value and negative predictive value were calculated at the Youden index-optimal threshold.</p><p><strong>Results: </strong>XGBoost achieved the highest performance (accuracy=0.74; AUC=0.82), outperforming other classifiers. In survival analyses, the XGBoost-Cox model with a concordance index (C-index) of 0.70 exceeded the traditional Cox model (C-index=0.66). SHAP analysis and Cox models consistently identified metastatic site count, tumor mutational burden, fraction of genome altered, and the presence of distant liver and bone metastases as among the strongest prognostic factors, a pattern that held at both the pan-cancer level and recurrently across cancer-specific models. At the cancer-specific level, performance varied; prostate cancer achieved the highest predictive accuracy (AUC=0.88), while pancreatic cancer was notably more challenging (AUC=0.68). Kaplan-Meier analyses demonstrated marked survival separation between patients with and without metastases (80-month survival: approximately 0.80 vs 0.30). At the Youden-optimal threshold, positive predictive value and negative predictive value were approximately 70% and 80%, respectively, supporting clinical use for risk stratification.</p><p><strong>Conclusions: </strong>Explainable ML mod
背景:转移性癌症仍然是世界范围内癌症相关死亡的主要原因之一。然而,该人群的存活率预测仍然受到异质性临床表现和高维分子特征的限制。机器学习(ML)的进步为将不同的患者和肿瘤水平的因素整合到可解释的预测ML模型中提供了机会。利用大型真实世界数据集和现代ML技术可以改进风险分层和精确肿瘤学。目的:本研究旨在利用纪念斯隆-凯特林-转移(MSK-MET)数据集开发和解释预测转移性癌症患者总生存的ML模型,并通过可解释的人工智能技术确定关键的预后生物标志物。方法:我们对MSK-MET队列进行了回顾性分析,包括27种肿瘤类型的25,775例患者。经过数据清理和平衡,纳入了20338例患者。总生存率定义为最后随访时的死亡vs存活。五个分类器(极端梯度增强[XGBoost],逻辑回归,随机森林,决策树和朴素贝叶斯)使用80/20分层分割进行训练,并通过网格搜索进行优化,并进行5倍交叉验证。通过准确性、曲线下面积(AUC)、精度、召回率和f1评分来评估模型的性能。采用Shapley加性解释(SHAP)实现模型的可解释性。生存分析包括Kaplan-Meier估计、Cox比例风险模型和用于事件时间预测的XGBoost-Cox模型。在优登指数-最优阈值下计算阳性预测值和阴性预测值。结果:XGBoost获得了最高的性能(准确率=0.74;AUC=0.82),优于其他分类器。在生存分析中,XGBoost-Cox模型的一致性指数(C-index)为0.70,优于传统Cox模型(C-index=0.66)。SHAP分析和Cox模型一致认为转移部位计数、肿瘤突变负担、基因组改变的部分以及远处肝脏和骨转移的存在是最强的预后因素,这种模式在泛癌症水平和癌症特异性模型中都存在。在癌症特异性水平上,表现各不相同;前列腺癌的预测准确率最高(AUC=0.88),而胰腺癌的预测准确率更高(AUC=0.68)。Kaplan-Meier分析显示,有和没有转移的患者之间存在明显的生存差异(80个月生存率:约0.80 vs 0.30)。在约登最优阈值下,阳性预测值和阴性预测值分别约为70%和80%,支持临床应用于风险分层。结论:可解释的ML模型,特别是XGBoost联合SHAP,可以强烈预测转移性癌症的生存能力,同时突出临床有意义的特征。这些发现支持使用基于ml的工具进行患者咨询、治疗计划和整合到精确的肿瘤学工作流程中。未来的工作应包括对独立队列进行外部验证,通过基于快速医疗互操作性资源的仪表板与电子健康记录集成,以及对临床医生进行前瞻性循环评估以评估实际使用情况。
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引用次数: 0
New Technologies and Digital Health Tools in Patients With Solid Tumors and Hematological Malignancies: Cross-Sectional Multicenter Survey Study. 实体肿瘤和血液系统恶性肿瘤患者的新技术和数字健康工具:横断面多中心调查研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-13 DOI: 10.2196/58823
Alberto Lopez-Garcia, Carola Diaz-Aizpun, Beatriz Gallego-Diaz, Carolina Miranda-Castillo, Maria Yuste-Platero, Pilar Beltran-Alvarez, Cristina Carames-Sanchez, Jesus Garcia-Foncillas, Pilar Llamas-Sillero, Marta Del Olmo-Rodriguez, Jorge Short-Apellaniz, Bernadette Pfang, Javier Arcos-Campillo, Raul Cordoba

Background: Barriers to eHealth use include lack of technological infrastructure, resistance to change, and inequities in access. However, patterns of access to and use of eHealth tools in people being treated for cancer have not been fully described in the literature.

Objective: Our aim was to describe the patterns of access to and use of eHealth tools among outpatients receiving treatment for hematological malignancies and solid tumors.

Methods: We conducted a cross-sectional multicenter study using a survey offered to patients aged over 18 years receiving outpatient treatment for hematological malignancies or solid tumors at 4 teaching hospitals in Madrid, Spain, between February 1, 2021, and November 30, 2021. The survey instrument featured questions about patients' demographic and social characteristics, cancer diagnosis, use of information and communication technology (ICT), use and opinions of the Patient Portal, and changes in ICT use during the COVID-19 pandemic. To study the relationship between the different variables, 2-tailed Student t tests or ANOVA were used for variables with normal distribution, and the Mann-Whitney or Kruskal-Wallis tests were used for variables with nonnormal distribution. Statistical analyses were performed using SPSS (version 25; IBM Corp) for Windows.

Results: In total, 200 patients were included in our study. Median age was 60 (range 21-87) years. A total of 130 (65%) patients presented with hematological malignancies. Most (n=181, 90.5%) patients considered that eHealth tools might help to improve communication with the medical team during their treatment. Retired participants (28.6% vs 71.4%; P<.001), those older than 60 years (26% vs 74%; P<.001), and those without higher education (2.6% vs 97.4%; P<.001) showed significantly lower rates of internet use, with no observed sex-related differences. A total of 177 (88.5%) patients found the Patient Portal useful, and 140 (70%) reported increased use of ICT due to the COVID-19 pandemic.

Conclusions: Most (177/200, 88.5%) patients viewed eHealth tools as useful and believed that it was helpful to improve communication with their care team. However, notable gaps in the use of eHealth were observed in certain groups of patients, with significant differences in use due to age, education, and employment status. Strategies to identify subgroups at risk for unequal access to digital health, as well as to facilitate access and use, are warranted.

背景:电子卫生使用的障碍包括缺乏技术基础设施、抗拒变革和获取不公平。然而,文献中并未充分描述正在接受癌症治疗的患者获取和使用电子卫生工具的模式。目的:我们的目的是描述在接受血液恶性肿瘤和实体肿瘤治疗的门诊患者中获取和使用电子健康工具的模式。方法:我们在2021年2月1日至2021年11月30日期间,对西班牙马德里4家教学医院接受血液恶性肿瘤或实体瘤门诊治疗的18岁以上患者进行了一项横断面多中心研究。该调查工具的问题包括患者的人口统计学和社会特征、癌症诊断、信息通信技术(ICT)的使用、患者门户网站的使用和意见,以及COVID-19大流行期间信息通信技术使用的变化。为研究不同变量之间的关系,正态分布的变量采用双尾Student t检验或方差分析,非正态分布的变量采用Mann-Whitney或Kruskal-Wallis检验。统计分析使用SPSS (version 25; IBM Corp) for Windows进行。结果:本研究共纳入200例患者。中位年龄为60岁(21-87岁)。共有130例(65%)患者表现为血液系统恶性肿瘤。大多数(n=181, 90.5%)患者认为电子健康工具可能有助于改善他们在治疗期间与医疗团队的沟通。结论:大多数(177/200,88.5%)患者认为电子健康工具是有用的,并认为有助于改善与护理团队的沟通。然而,在某些患者群体中,由于年龄、教育程度和就业状况的不同,在使用电子健康方面存在显著差异。有必要制定战略,确定有不平等获取数字卫生服务风险的亚群体,并促进获取和使用。
{"title":"New Technologies and Digital Health Tools in Patients With Solid Tumors and Hematological Malignancies: Cross-Sectional Multicenter Survey Study.","authors":"Alberto Lopez-Garcia, Carola Diaz-Aizpun, Beatriz Gallego-Diaz, Carolina Miranda-Castillo, Maria Yuste-Platero, Pilar Beltran-Alvarez, Cristina Carames-Sanchez, Jesus Garcia-Foncillas, Pilar Llamas-Sillero, Marta Del Olmo-Rodriguez, Jorge Short-Apellaniz, Bernadette Pfang, Javier Arcos-Campillo, Raul Cordoba","doi":"10.2196/58823","DOIUrl":"10.2196/58823","url":null,"abstract":"<p><strong>Background: </strong>Barriers to eHealth use include lack of technological infrastructure, resistance to change, and inequities in access. However, patterns of access to and use of eHealth tools in people being treated for cancer have not been fully described in the literature.</p><p><strong>Objective: </strong>Our aim was to describe the patterns of access to and use of eHealth tools among outpatients receiving treatment for hematological malignancies and solid tumors.</p><p><strong>Methods: </strong>We conducted a cross-sectional multicenter study using a survey offered to patients aged over 18 years receiving outpatient treatment for hematological malignancies or solid tumors at 4 teaching hospitals in Madrid, Spain, between February 1, 2021, and November 30, 2021. The survey instrument featured questions about patients' demographic and social characteristics, cancer diagnosis, use of information and communication technology (ICT), use and opinions of the Patient Portal, and changes in ICT use during the COVID-19 pandemic. To study the relationship between the different variables, 2-tailed Student t tests or ANOVA were used for variables with normal distribution, and the Mann-Whitney or Kruskal-Wallis tests were used for variables with nonnormal distribution. Statistical analyses were performed using SPSS (version 25; IBM Corp) for Windows.</p><p><strong>Results: </strong>In total, 200 patients were included in our study. Median age was 60 (range 21-87) years. A total of 130 (65%) patients presented with hematological malignancies. Most (n=181, 90.5%) patients considered that eHealth tools might help to improve communication with the medical team during their treatment. Retired participants (28.6% vs 71.4%; P<.001), those older than 60 years (26% vs 74%; P<.001), and those without higher education (2.6% vs 97.4%; P<.001) showed significantly lower rates of internet use, with no observed sex-related differences. A total of 177 (88.5%) patients found the Patient Portal useful, and 140 (70%) reported increased use of ICT due to the COVID-19 pandemic.</p><p><strong>Conclusions: </strong>Most (177/200, 88.5%) patients viewed eHealth tools as useful and believed that it was helpful to improve communication with their care team. However, notable gaps in the use of eHealth were observed in certain groups of patients, with significant differences in use due to age, education, and employment status. Strategies to identify subgroups at risk for unequal access to digital health, as well as to facilitate access and use, are warranted.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"12 ","pages":"e58823"},"PeriodicalIF":2.7,"publicationDate":"2026-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12798843/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145967427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Pathways and Roadblocks in Navigating Online Cancer Communities: Qualitative Study Among Young Adult Cancer Survivors. 导航在线癌症社区的途径和障碍:年轻成年癌症幸存者的定性研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-12 DOI: 10.2196/79893
Qi Chen, Erin Donovan, Leyi Zhou, Lailea Noel, Barbara Jones
<p><strong>Background: </strong>Online cancer communities provide young adult (YA) cancer survivors with access to informational and emotional support that may not be available in traditional care settings. While these platforms offer vital connection opportunities, the unique pathways YA survivors take to find online communities and the challenges they encounter remain underexplored.</p><p><strong>Objectives: </strong>This study aimed to (1) examine how YA cancer survivors locate and access online cancer communities and (2) identify barriers that impede their participation or sustained engagement.</p><p><strong>Methods: </strong>The first author conducted semistructured interviews with 12 YA cancer survivors aged 18 to 39 years who had experience using online resources after their diagnosis. Participants were recruited through purposive and snowball sampling from YA cancer-focused nonprofit organizations and through social media. Interviews were conducted via Zoom and analyzed using thematic analysis. The analytic process followed Braun and Clarke's 6-phase framework and was supported by MAXQDA software. Codes and themes were generated inductively and refined iteratively.</p><p><strong>Results: </strong>Participants ranged in age from 24 to 39 years (mean 32, SD 5.08 years), with an average of 3 (SD 2.98) years since diagnosis. Most identified as female (n=9, 75%) and non-Hispanic White (n=7, 58%). Over half held a graduate degree (n=7, 58%), half were employed full time (n=6, 50%), and most resided in suburban areas (n=8, 67%). Cancer diagnoses included leukemia (n=3, 25%), lymphoma (n=4, 33%), and other solid tumors such as testicular, colon, and uterine cancers. At the time of the interview, 3 (25%) participants were in active treatment and 9 (75%) had completed treatment. Participants described five primary pathways to discovering online cancer communities: (1) direct searching using hashtags or keywords, (2) community hubs on public accounts, (3) referrals from health providers or social networks, (4) algorithm-recommended content, and (5) connections formed within preexisting online interest-based groups. Despite the promise of digital tools, participants encountered five roadblocks: (1) platform fragmentation and digital literacy complicated initial discovery; (2) lack of representation made it difficult for some to find communities where they felt seen; (3) emotional overload and engagement fatigue, along with shifting group hierarchies and boundaries, further hindered sustained participation; and (5) lastly, concerns about cyberbullying discouraged open engagement, prompting some to withdraw or limit their presence in online communities.</p><p><strong>Conclusions: </strong>YA cancer survivors navigated a fragmented and emotionally complex digital landscape in search of social support. Their ability to access and engage with online communities was shaped not only by individual agency and digital literacy but also by structural and relati
背景:在线癌症社区为年轻成人(YA)癌症幸存者提供了在传统护理环境中可能无法获得的信息和情感支持。虽然这些平台提供了重要的联系机会,但青少年幸存者找到在线社区和遇到挑战的独特途径仍未得到充分探索。目的:本研究旨在(1)研究YA癌症幸存者如何定位和访问在线癌症社区;(2)确定阻碍他们参与或持续参与的障碍。方法:第一作者对12名年龄在18至39岁之间的YA癌症幸存者进行了半结构化访谈,这些幸存者在诊断后使用了在线资源。参与者是通过有目的的滚雪球式抽样从关注青少年癌症的非营利组织和社交媒体中招募的。访谈通过Zoom进行,并使用专题分析进行分析。分析过程遵循Braun和Clarke的6阶段框架,并由MAXQDA软件支持。代码和主题是通过归纳和迭代的方式生成的。结果:参与者年龄从24岁到39岁(平均32岁,SD 5.08年),自诊断以来平均3年(SD 2.98)。大多数被确定为女性(n=9, 75%)和非西班牙裔白人(n=7, 58%)。超过一半的人拥有研究生学位(n= 7,58%),一半的人全职工作(n= 6,50%),大多数人居住在郊区(n= 8,67%)。癌症诊断包括白血病(n=3, 25%)、淋巴瘤(n=4, 33%)和其他实体肿瘤,如睾丸癌、结肠癌和子宫癌。在访谈时,3名(25%)参与者正在积极治疗,9名(75%)参与者已完成治疗。参与者描述了发现在线癌症社区的五种主要途径:(1)使用标签或关键词直接搜索,(2)公共账户上的社区中心,(3)来自医疗服务提供者或社交网络的推荐,(4)算法推荐的内容,(5)在已有的在线兴趣小组中形成的联系。尽管数字工具带来了希望,但参与者遇到了五个障碍:(1)平台碎片化和数字素养使初始发现变得复杂;(2)缺乏代表性使一些人难以找到他们感到被关注的社区;(3)情绪超载和参与疲劳,以及群体层级和边界的变化,进一步阻碍了持续参与;(5)最后,对网络欺凌的担忧阻碍了公开参与,促使一些人退出或限制他们在网络社区的存在。结论:青少年癌症幸存者在一个支离破碎、情感复杂的数字环境中寻找社会支持。他们访问和参与在线社区的能力不仅受到个人机构和数字素养的影响,还受到结构和关系因素的影响。这项研究强调了建立可发现、包容和可持续的数字支持环境的必要性。肿瘤学专业人员和同辈幸存者可以在促进安全、知情地进入在线癌症社区方面发挥至关重要的作用。有必要与医疗保健提供者、青少年癌症幸存者和在线社区促进者进行多层次的心理教育和培训,以弥合差距,提高数字幸存者护理的公平性。
{"title":"Pathways and Roadblocks in Navigating Online Cancer Communities: Qualitative Study Among Young Adult Cancer Survivors.","authors":"Qi Chen, Erin Donovan, Leyi Zhou, Lailea Noel, Barbara Jones","doi":"10.2196/79893","DOIUrl":"10.2196/79893","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Online cancer communities provide young adult (YA) cancer survivors with access to informational and emotional support that may not be available in traditional care settings. While these platforms offer vital connection opportunities, the unique pathways YA survivors take to find online communities and the challenges they encounter remain underexplored.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objectives: &lt;/strong&gt;This study aimed to (1) examine how YA cancer survivors locate and access online cancer communities and (2) identify barriers that impede their participation or sustained engagement.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;The first author conducted semistructured interviews with 12 YA cancer survivors aged 18 to 39 years who had experience using online resources after their diagnosis. Participants were recruited through purposive and snowball sampling from YA cancer-focused nonprofit organizations and through social media. Interviews were conducted via Zoom and analyzed using thematic analysis. The analytic process followed Braun and Clarke's 6-phase framework and was supported by MAXQDA software. Codes and themes were generated inductively and refined iteratively.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Participants ranged in age from 24 to 39 years (mean 32, SD 5.08 years), with an average of 3 (SD 2.98) years since diagnosis. Most identified as female (n=9, 75%) and non-Hispanic White (n=7, 58%). Over half held a graduate degree (n=7, 58%), half were employed full time (n=6, 50%), and most resided in suburban areas (n=8, 67%). Cancer diagnoses included leukemia (n=3, 25%), lymphoma (n=4, 33%), and other solid tumors such as testicular, colon, and uterine cancers. At the time of the interview, 3 (25%) participants were in active treatment and 9 (75%) had completed treatment. Participants described five primary pathways to discovering online cancer communities: (1) direct searching using hashtags or keywords, (2) community hubs on public accounts, (3) referrals from health providers or social networks, (4) algorithm-recommended content, and (5) connections formed within preexisting online interest-based groups. Despite the promise of digital tools, participants encountered five roadblocks: (1) platform fragmentation and digital literacy complicated initial discovery; (2) lack of representation made it difficult for some to find communities where they felt seen; (3) emotional overload and engagement fatigue, along with shifting group hierarchies and boundaries, further hindered sustained participation; and (5) lastly, concerns about cyberbullying discouraged open engagement, prompting some to withdraw or limit their presence in online communities.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;YA cancer survivors navigated a fragmented and emotionally complex digital landscape in search of social support. Their ability to access and engage with online communities was shaped not only by individual agency and digital literacy but also by structural and relati","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"12 ","pages":"e79893"},"PeriodicalIF":2.7,"publicationDate":"2026-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12795408/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145960630","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Health Care Providers' Perceptions of Unmet Needs Among African American Cancer Caregivers: Qualitative Investigation Among US Medical Professionals. 医疗保健提供者对非裔美国癌症护理人员未满足需求的看法:美国医疗专业人员的定性调查。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-08 DOI: 10.2196/76266
Brad Love, Gerold Dermid, Sean Upshaw, Amy Stark
<p><strong>Background: </strong>African American caregivers are more likely to be sole unpaid caregivers, spend more hours on caregiving tasks, and receive less external support compared to White caregivers; yet, limited research focuses on their specific needs. Even less attention has been paid to health care provider perspectives on how to better support this population, despite providers' critical role in connecting caregivers to resources and implementing systems-level changes.</p><p><strong>Objective: </strong>This study aimed to understand health care providers' experiences supporting African American cancer caregivers and to identify actionable recommendations for improving care. Specific objectives were to (1) identify unmet needs that providers observe among African American cancer caregivers, (2) explore barriers preventing these needs from being met, and (3) elicit provider recommendations for interventions to enhance caregiver support.</p><p><strong>Methods: </strong>Between January and May 2023, we conducted semistructured online interviews with 12 health care providers across 7 US states. Providers were purposively sampled from facilities serving patient populations with ≥20% African American representation. Participants included physicians (n=7), social workers (n=2), nurses (n=2), and other providers (n=1), with 58% identifying as Black or African American and 83% having more than 15 years of clinical experience. Interviews lasted ~60 minutes and were conducted via Zoom (Zoom Video Communications, Inc) with audio recording. Data were analyzed using condensed thematic analysis guided by the McKillip needs assessment framework and socioecological model.</p><p><strong>Results: </strong>Thematic analysis revealed 2 overarching categories of findings. First, providers identified three types of unmet needs among African American cancer caregivers (1) practical needs, including transportation, financial constraints, and competing family obligations; (2) social-emotional needs, including stress, burnout, and fear; and (3) cultural barriers, including medical mistrust rooted in historical trauma, "superhero Black woman" expectations, tensions between faith and medical treatment, and stigma around mental health. Second, providers offered four themes of recommendations for transformational change: (1) formal acknowledgment and compensation of caregiving as essential work; (2) integration of caregivers as equal members of multidisciplinary care teams; (3) recognition and leveraging of cultural assets, including strong family networks, community values, and faith-based support; and (4) strengthening providers' roles as hubs for individual-level support and systems-level advocacy.</p><p><strong>Conclusions: </strong>Health care providers readily identify substantial unmet needs among African American cancer caregivers and offer practice-based recommendations that extend beyond individual-level support to emphasize structural and systems transfo
背景:与白人看护者相比,非裔美国看护者更有可能是唯一的无偿看护者,花更多的时间在照顾任务上,获得的外部支持更少;然而,有限的研究集中在他们的具体需求上。尽管卫生保健提供者在将护理人员与资源联系起来以及实施系统级变革方面发挥着关键作用,但人们对如何更好地支持这一人群的卫生保健提供者观点的关注却更少。目的:本研究旨在了解卫生保健提供者支持非裔美国癌症护理人员的经验,并确定改善护理的可行建议。具体目标是:(1)确定提供者在非裔美国癌症护理人员中观察到的未满足的需求,(2)探索阻止这些需求被满足的障碍,(3)得出提供者建议的干预措施,以加强护理人员的支持。方法:在2023年1月至5月期间,我们对美国7个州的12名卫生保健提供者进行了半结构化的在线访谈。有目的地从服务非裔美国人≥20%的患者群体的设施中抽样提供者。参与者包括医生(n=7)、社会工作者(n=2)、护士(n=2)和其他提供者(n=1),其中58%为黑人或非裔美国人,83%有超过15年的临床经验。访谈持续约60分钟,通过Zoom (Zoom Video Communications, Inc .)进行,并有录音。数据分析采用McKillip需求评估框架和社会生态模型指导下的浓缩专题分析。结果:专题分析揭示了2个总体类别的发现。首先,提供者确定了非裔美国癌症护理人员未满足的三种需求(1)实际需求,包括交通、经济限制和竞争性家庭义务;(2)社会情感需求,包括压力、倦怠和恐惧;(3)文化障碍,包括源于历史创伤的医疗不信任,对“超级英雄黑人女性”的期望,信仰与医疗之间的紧张关系,以及围绕心理健康的污名。第二,提供者提出了转型变革的四个主题建议:(1)对护理工作的正式承认和补偿;(2)护理人员作为多学科护理团队平等成员的整合;(3)对文化资产的认可和利用,包括强大的家庭网络、社区价值观和基于信仰的支持;(4)加强提供者作为个人层面支持和系统层面倡导中心的作用。结论:卫生保健提供者很容易识别非洲裔美国人癌症护理人员中大量未满足的需求,并提供基于实践的建议,这些建议超出了个人层面的支持,以强调结构和系统转型。研究结果表明,有意义的改善需要多层次的干预。这包括使护理工作正规化和补偿的政策变化,将护理人员纳入护理团队的组织重组,文化谦逊和基于资产的方法的提供者培训,以及解决历史创伤和重建与非裔美国人社区信任的制度承诺。这种新颖的以提供者为中心的方法为临床设置提供了可操作的途径,以减少差异并改善非裔美国癌症护理人员及其支持的患者的结果。
{"title":"Health Care Providers' Perceptions of Unmet Needs Among African American Cancer Caregivers: Qualitative Investigation Among US Medical Professionals.","authors":"Brad Love, Gerold Dermid, Sean Upshaw, Amy Stark","doi":"10.2196/76266","DOIUrl":"10.2196/76266","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;African American caregivers are more likely to be sole unpaid caregivers, spend more hours on caregiving tasks, and receive less external support compared to White caregivers; yet, limited research focuses on their specific needs. Even less attention has been paid to health care provider perspectives on how to better support this population, despite providers' critical role in connecting caregivers to resources and implementing systems-level changes.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Objective: &lt;/strong&gt;This study aimed to understand health care providers' experiences supporting African American cancer caregivers and to identify actionable recommendations for improving care. Specific objectives were to (1) identify unmet needs that providers observe among African American cancer caregivers, (2) explore barriers preventing these needs from being met, and (3) elicit provider recommendations for interventions to enhance caregiver support.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;Between January and May 2023, we conducted semistructured online interviews with 12 health care providers across 7 US states. Providers were purposively sampled from facilities serving patient populations with ≥20% African American representation. Participants included physicians (n=7), social workers (n=2), nurses (n=2), and other providers (n=1), with 58% identifying as Black or African American and 83% having more than 15 years of clinical experience. Interviews lasted ~60 minutes and were conducted via Zoom (Zoom Video Communications, Inc) with audio recording. Data were analyzed using condensed thematic analysis guided by the McKillip needs assessment framework and socioecological model.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Thematic analysis revealed 2 overarching categories of findings. First, providers identified three types of unmet needs among African American cancer caregivers (1) practical needs, including transportation, financial constraints, and competing family obligations; (2) social-emotional needs, including stress, burnout, and fear; and (3) cultural barriers, including medical mistrust rooted in historical trauma, \"superhero Black woman\" expectations, tensions between faith and medical treatment, and stigma around mental health. Second, providers offered four themes of recommendations for transformational change: (1) formal acknowledgment and compensation of caregiving as essential work; (2) integration of caregivers as equal members of multidisciplinary care teams; (3) recognition and leveraging of cultural assets, including strong family networks, community values, and faith-based support; and (4) strengthening providers' roles as hubs for individual-level support and systems-level advocacy.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusions: &lt;/strong&gt;Health care providers readily identify substantial unmet needs among African American cancer caregivers and offer practice-based recommendations that extend beyond individual-level support to emphasize structural and systems transfo","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"12 ","pages":"e76266"},"PeriodicalIF":2.7,"publicationDate":"2026-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12828305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145935527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Hashimoto Thyroiditis and Progression of Papillary Thyroid Cancer: 10-Year Retrospective Cohort Study. 桥本甲状腺炎与甲状腺乳头状癌进展:10年回顾性队列研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-06 DOI: 10.2196/80535
Xin Li, Xiangyun Yao, Rui Shan, Fang Mei, Shibing Song, Bangkai Sun, Chunhui Yuan, Zheng Liu

Background: In recent years, the global incidence of thyroid cancer has been increasing.

Objective: This study aimed to examine the association between Hashimoto thyroiditis (HT) and papillary thyroid cancer (PTC) progression under active surveillance (AS).

Methods: Our retrospective study was conducted at Peking University Third Hospital and included 203 patients with PTC who underwent AS for ≥6 months before surgery. Patients were first categorized into 2 groups: the HT group (n=90) and the non-HT group (n=113). Cox proportional hazards models were then used to evaluate the association between HT and PTC progression during AS, adjusting for age, sex, baseline tumor size, BMI, pregnancy status, number of tumor foci, and thyroid-stimulating hormone level. Subgroup analyses stratified by the 6 covariates mentioned above were also applied to explore the potential effect modification.

Results: No significant difference was observed between the HT and non-HT groups in PTC progression-free survival (hazard ratio [HR] 1.11, 95% CI 0.61-1.99; P=.74), tumor enlargement-free survival (HR 1.02, 95% CI 0.56-1.86; P=.95), or lymph node metastasis-free survival (HR 1.76, 95% CI 0.31-10.12; P=.52). Subgroup analyses revealed a potential interaction between HT and BMI. Among patients who were overweight or obese (BMI >24 kg/m²), HT was significantly associated with an increased risk of disease progression (HR 6.32, 95% CI 1.84-21.69; P=.003), while among patients with BMI ≤24 kg/m2, no association between HT and progression risk was observed (P=.01).

Conclusions: We found no evidence of association between HT and PTC progression during AS. However, the relationship between HT and PTC progression may be modified by overweight or obesity status.

背景:近年来,全球甲状腺癌的发病率呈上升趋势。目的:本研究旨在探讨主动监测(AS)下桥本甲状腺炎(HT)与甲状腺乳头状癌(PTC)进展的关系。方法:我们在北京大学第三医院进行回顾性研究,纳入203例术前≥6个月的PTC患者。首先将患者分为两组:HT组(n=90)和非HT组(n=113)。然后使用Cox比例风险模型来评估AS期间HT与PTC进展之间的关系,调整年龄、性别、基线肿瘤大小、BMI、妊娠状况、肿瘤病灶数量和促甲状腺激素水平。采用上述6个协变量分层亚组分析,探讨潜在的效应修正。结果:HT组与非HT组在PTC无进展生存率(风险比[HR] 1.11, 95% CI 0.61-1.99; P= 0.74)、肿瘤无扩大生存率(风险比[HR] 1.02, 95% CI 0.56-1.86; P= 0.95)和淋巴结无转移生存率(风险比[HR] 1.76, 95% CI 0.31-10.12; P= 0.52)方面无显著差异。亚组分析揭示了HT和BMI之间潜在的相互作用。在超重或肥胖(BMI≥24 kg/m2)的患者中,HT与疾病进展风险增加显著相关(HR 6.32, 95% CI 1.84-21.69; P= 0.003),而在BMI≤24 kg/m2的患者中,HT与疾病进展风险无相关性(P= 0.01)。结论:我们没有发现AS期间HT与PTC进展相关的证据。然而,HT与PTC进展之间的关系可能因超重或肥胖状态而改变。
{"title":"Hashimoto Thyroiditis and Progression of Papillary Thyroid Cancer: 10-Year Retrospective Cohort Study.","authors":"Xin Li, Xiangyun Yao, Rui Shan, Fang Mei, Shibing Song, Bangkai Sun, Chunhui Yuan, Zheng Liu","doi":"10.2196/80535","DOIUrl":"10.2196/80535","url":null,"abstract":"<p><strong>Background: </strong>In recent years, the global incidence of thyroid cancer has been increasing.</p><p><strong>Objective: </strong>This study aimed to examine the association between Hashimoto thyroiditis (HT) and papillary thyroid cancer (PTC) progression under active surveillance (AS).</p><p><strong>Methods: </strong>Our retrospective study was conducted at Peking University Third Hospital and included 203 patients with PTC who underwent AS for ≥6 months before surgery. Patients were first categorized into 2 groups: the HT group (n=90) and the non-HT group (n=113). Cox proportional hazards models were then used to evaluate the association between HT and PTC progression during AS, adjusting for age, sex, baseline tumor size, BMI, pregnancy status, number of tumor foci, and thyroid-stimulating hormone level. Subgroup analyses stratified by the 6 covariates mentioned above were also applied to explore the potential effect modification.</p><p><strong>Results: </strong>No significant difference was observed between the HT and non-HT groups in PTC progression-free survival (hazard ratio [HR] 1.11, 95% CI 0.61-1.99; P=.74), tumor enlargement-free survival (HR 1.02, 95% CI 0.56-1.86; P=.95), or lymph node metastasis-free survival (HR 1.76, 95% CI 0.31-10.12; P=.52). Subgroup analyses revealed a potential interaction between HT and BMI. Among patients who were overweight or obese (BMI >24 kg/m²), HT was significantly associated with an increased risk of disease progression (HR 6.32, 95% CI 1.84-21.69; P=.003), while among patients with BMI ≤24 kg/m2, no association between HT and progression risk was observed (P=.01).</p><p><strong>Conclusions: </strong>We found no evidence of association between HT and PTC progression during AS. However, the relationship between HT and PTC progression may be modified by overweight or obesity status.</p>","PeriodicalId":45538,"journal":{"name":"JMIR Cancer","volume":"12 ","pages":"e80535"},"PeriodicalIF":2.7,"publicationDate":"2026-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12774399/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145913174","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Financial Toxicity of Hematologic Malignancy Therapies, Including Cellular Therapy and Its Impact on Access to Care: Prospective Pilot Study. 血液恶性肿瘤治疗的财务毒性,包括细胞治疗及其对获得护理的影响:前瞻性试点研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-06 DOI: 10.2196/68101
Lemchukwu Amaeshi, Lauren Laufer, Kateryna Fedorov, Alex Sisto, David Levitz, Rosmi Mathew, Karen Wright, Dennis Cooper, Mendel Goldfinger, Ioannis Mantzaris, R Alejandro Sica, Kira Gritsman, Marina Konopleva, Ridhi Gupta, Noah Kornblum, Chenxin Zhang, Mimi Kim, Amit Verma, Bruce Rapkin, Aditi Shastri, Nishi Shah

Background: Patients with cancer often face significant financial challenges, known as financial toxicity (FT), which is associated with reduced quality of life. Patients with hematologic malignancies (HMs) are especially vulnerable due to intensive and prolonged treatments, frequent hospital visits, and a high risk of complications. While FT affects many in the general population, it is particularly severe among racial and ethnic minorities, especially those below the poverty line. To our knowledge, no studies have specifically examined FT in this vulnerable group in the United States.

Objective: This study aimed to evaluate the severity of FT in patients receiving treatment for HMs in a socioeconomically underserved population, explore sociodemographic factors that may predict the severity of FT, and evaluate the subjective experiences of these patients as they relate to FT.

Methods: We conducted a prospective, observational, longitudinal study at the Montefiore Cancer Center's outpatient department in the Bronx, New York, from October 1, 2022, to October 30, 2023. Participants included either adult patients newly diagnosed (ND) with HMs or those already diagnosed, undergoing cellular therapy (CT). The severity of FT was assessed using the validated Comprehensive Score for Financial Toxicity-Functional Assessment of Chronic Illness Therapy (COST-FACIT) questionnaire. Additionally, an investigator-designed questionnaire was developed to gather sociodemographic data and evaluate the subjective effects of financial burden on patient care. Patients in both the ND and CT groups were followed for 90 days. Data collection occurred at their initial presentation, as well as on days 30 and 90.

Results: Ninety patients participated in the study (ND=52 and CT=38). The median age was 59 (IQR 44-66) years, with 27% (n=24) African American and 55% (n=48) Hispanic. Overall, 75% (n=67) of participants experienced some degree of FT, most with mild FT at baseline (day 0, median COST-FACIT score=19.4). In the CT group, FT worsened significantly over time, with a decline in median COST-FACIT scores from 19.9 at day 0 to 15.5 on day 90 (P=.02). In a multivariable linear regression model, race and ethnicity were a significant predictor of FT burden: identifying as African American or Hispanic was associated with a significantly lower COST-FACIT score (ie, higher FT) compared to non-Hispanic White participants (B=-3.08, P=.04, 95% CI -6.05 to -0.12). Additionally, over half of ND and CT participants reported difficulty affording basic necessities (ND: 28/52, 54%; CT: 23/38, 61%) and concerns regarding transportation access and costs (ND: 26/50, 52%; CT: n=18/38, 47%).

Conclusions: FT is prevalent among patients with HMs receiving care in underserved populations, and the burden is significantly higher among African American and Hispanic populations.

背景:癌症患者经常面临重大的经济挑战,被称为经济毒性(FT),这与生活质量下降有关。恶性血液病(HMs)患者由于接受密集和长期的治疗、频繁的医院就诊以及并发症的高风险,尤其容易受到伤害。虽然FT影响到普通人群中的许多人,但它在少数种族和族裔群体中尤其严重,尤其是那些生活在贫困线以下的人。据我们所知,没有研究专门调查过美国这一弱势群体的FT。目的:本研究旨在评估在社会经济服务不足的人群中接受HMs治疗的患者的FT严重程度,探索可能预测FT严重程度的社会人口统计学因素,并评估这些患者与FT相关的主观体验。方法:我们在纽约布朗克斯的Montefiore癌症中心门诊部进行了一项前瞻性、观察性、纵向研究,时间为2022年10月1日至2023年10月30日。参与者包括新诊断为HMs的成年患者(ND)或已经诊断为接受细胞治疗(CT)的患者。使用经验证的慢性疾病治疗财务毒性-功能评估综合评分(COST-FACIT)问卷对FT的严重程度进行评估。此外,研究人员设计了一份问卷来收集社会人口统计数据,并评估经济负担对患者护理的主观影响。ND组和CT组均随访90天。数据收集在初次就诊时以及第30天和第90天进行。结果:90例患者参与研究(ND=52, CT=38)。中位年龄为59岁(IQR 44-66),其中27% (n=24)为非裔美国人,55% (n=48)为西班牙裔。总体而言,75% (n=67)的参与者经历了一定程度的FT,大多数在基线时为轻度FT(第0天,中位COST-FACIT评分=19.4)。在CT组中,FT随着时间的推移而显著恶化,中位COST-FACIT评分从第0天的19.9下降到第90天的15.5 (P= 0.02)。在多变量线性回归模型中,种族和民族是FT负担的重要预测因素:与非西班牙裔白人参与者相比,识别为非洲裔美国人或西班牙裔与显著较低的成本- facit评分(即更高的FT)相关(B=-3.08, P= 0.04, 95% CI -6.05至-0.12)。此外,超过一半的ND和CT参与者表示难以负担基本必需品(ND: 28/ 52,54%; CT: 23/ 38,61%),并担心交通运输和成本(ND: 26/ 50,52%; CT: 18/ 38,47%)。结论:在医疗服务不足的人群中,接受治疗的HMs患者普遍存在FT,非裔美国人和西班牙裔人群的负担明显更高。
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引用次数: 0
The Role of Resilience in Coping With Future Uncertainty Among People With Brain Tumors: Cross-Sectional Study. 弹性在脑肿瘤患者应对未来不确定性中的作用:横断面研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2026-01-06 DOI: 10.2196/71674
Li-Ting Huang Longcoy, Shu-Yuan Liang, Ardith Z Doorenbos

Background: Adults with brain tumors learn to navigate unpredictable physical and psychological symptoms along with the possibilities of tumor recurrence. As a result, they tend to become resilient to confronting profound uncertainty and actively employ coping strategies. Yet, the impact of resilience on coping strategies among people with brain tumors has not been fully explored.

Objective: This study aimed to examine the effects of resilience on the association between future uncertainty and two distinct types of coping strategies (problem-focused coping and emotion-focused coping) among people with brain tumors in Taiwan.

Methods: A parent study recruited 95 adults with brain tumors undergoing at least 1 month of chemotherapy or radiotherapy at a veterans general hospital in northern Taiwan. We assessed resilience, future uncertainty, and coping strategies via a secondary analysis of data from the parent study collected using the Chinese versions of the Resilience Scale, the European Organization for Research and Treatment of Cancer's Quality of Life Questionnaire for brain cancer, and the revised Ways of Coping Checklist. Simple mediation models were conducted to examine the role of resilience between future uncertainty and the two types of coping strategies.

Results: Most participants demonstrated low resilience and responded to stress with both problem- and emotion-focused coping strategies. Simple mediation analyses showed a statistically significant association between an increase in resilience and adoption of each type of coping strategy. In addition, resilience was a statistically significant mediator in the association between future uncertainty and both problem- and emotion-focused coping strategies.

Conclusions: Brain tumor disease trajectories require people to effectively adopt both problem- and emotion-focused coping strategies to confront uncertainty. Health care providers play a crucial role in evaluating and fostering their patients' resilience to promote adaptability through effective coping strategies.

背景:患有脑肿瘤的成年人要学会应对不可预测的生理和心理症状以及肿瘤复发的可能性。因此,面对深刻的不确定性,他们往往变得有弹性,并积极采取应对策略。然而,恢复力对脑肿瘤患者应对策略的影响尚未得到充分探讨。摘要目的:本研究旨在探讨台湾地区脑肿瘤患者的心理弹性对未来不确定性与两种不同的应对策略(问题聚焦型应对和情绪聚焦型应对)之间的关系。方法:在台湾北部一家退伍军人总医院招募95名接受至少1个月化疗或放疗的成年脑肿瘤患者。我们通过使用中文版的心理弹性量表、欧洲癌症研究与治疗组织的脑癌生活质量问卷和修订后的应对方式清单,对父母研究的数据进行二次分析,评估了心理弹性、未来不确定性和应对策略。采用简单的中介模型考察弹性在未来不确定性与两种应对策略之间的作用。结果:大多数参与者表现出较低的恢复力,并以问题和情绪为中心的应对策略来应对压力。简单的中介分析显示,心理弹性的增加与采取各种应对策略之间存在统计学上显著的关联。此外,在未来不确定性与以问题和情绪为中心的应对策略之间,弹性是具有统计学意义的中介。结论:脑肿瘤疾病的发展轨迹要求人们有效地采用以问题为中心和以情绪为中心的应对策略来面对不确定性。卫生保健提供者在评估和培养患者的适应能力方面发挥着至关重要的作用,通过有效的应对策略来促进适应能力。
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引用次数: 0
MyPainPal, a Novel mHealth App to Improve Pain in Patients With Advanced Cancer: Single-Arm Pilot Study. MyPainPal,一款新型移动健康应用程序,可改善晚期癌症患者的疼痛:单臂试点研究。
IF 2.7 Q2 ONCOLOGY Pub Date : 2025-12-30 DOI: 10.2196/79942
Desiree R Azizoddin, Michael Hassett, Kris-Ann S Anderson, Daniela Kessler, Alexi Wright, Madeline Gorra, Benjamin Kematick, Isaac Chua, Douglas Brandoff, Kate Lally, Lida Nabati, Susan MacIsaac, James A Tulsky, Andrea Enzinger
<p><strong>Background: </strong>Pain is common among patients with advanced cancer and is often inadequately controlled. Opioids are central to treatment; yet, self-management is challenging, and clinicians lack scalable tools to monitor and support patients between visits.</p><p><strong>Objective: </strong>This study aimed to evaluate the feasibility and acceptability of MyPainPal (Dana-Faber Cancer Institute), a novel mobile health app designed to optimize cancer pain management. MyPainPal combines daily surveys assessing symptoms and analgesic use, algorithmic self-management support, tailored psychoeducation, and clinician monitoring. Secondary objectives were to explore preliminary clinical impact and identify priorities for refinement.</p><p><strong>Methods: </strong>This single-arm pilot study enrolled adults with advanced malignancies using opioids for moderate-to-severe pain from an outpatient palliative care clinic at a comprehensive cancer center. Participants used MyPainPal for 28 days while nurses monitored symptom responses via a secure portal, and also completed structured surveys at end-of-study. Primary assessment of usability and acceptability included the System Usability Scale (SUS; range 0-100), the Acceptability E-Scale (range 6-30), and ratings of satisfaction using a 5-point Likert scale. Semistructured debriefing interviews explored user experience, perceived impact, and suggestions for optimization.</p><p><strong>Results: </strong>Twenty participants with advanced cancer enrolled, with a mean age of 57 (SD 12.3) years, 55% (11/20) female, 80% (16/20) non-Hispanic White, with mixed cancer types. Over the 28-day study, patients logged into MyPainPal a median of 14 (IQR 8-17) times, and completed a median of 8 (IQR 5-14) symptom surveys, reflecting mean of 36% (SD 20%) of eligible (out-of-hospital) days on study. Usability and acceptability ratings of MyPainPal were high (mean SUS 78.3, SD 16.2; mean Acceptability E-Scale 24.0, SD 4.4); 79% rated overall satisfaction of greater than or equal to 4/5. Twenty percent of surveys generated an alert, prompting nurse outreach. In response, 5 participants had symptom medications changed and 2 had medication errors corrected. In debriefing interviews, many participants described that the intervention reduced barriers to pain reporting and facilitated timely and constructive interactions with care teams for symptom management. Several noted that the intervention validated their pain experience, reduced stigma around opioid use, enabled constructive conversations with providers, and promoted self-management. Patients recommended several survey modifications, including reducing their frequency and enabling more nuanced pain assessments. Participants underused the educational resources and suggested that they be featured more prominently. Some patients suggested that the MyPainPal app should be introduced earlier in patients' cancer pain trajectory when pain needs are higher and opioid
背景:疼痛在晚期癌症患者中很常见,但往往无法得到充分控制。阿片类药物是治疗的核心;然而,自我管理是具有挑战性的,临床医生缺乏可扩展的工具来监测和支持患者的两次就诊。目的:本研究旨在评估MyPainPal (Dana-Faber Cancer Institute)的可行性和可接受性,这是一款旨在优化癌症疼痛管理的新型移动健康应用程序。MyPainPal结合了评估症状和止痛药使用的日常调查、算法自我管理支持、量身定制的心理教育和临床医生监测。次要目标是探索初步临床影响并确定改进的优先事项。方法:这项单臂试点研究招募了在综合癌症中心门诊姑息治疗诊所使用阿片类药物治疗中度至重度疼痛的晚期恶性肿瘤成年人。参与者使用MyPainPal 28天,同时护士通过安全门户监控症状反应,并在研究结束时完成结构化调查。可用性和可接受性的主要评估包括系统可用性量表(SUS;范围0-100),可接受性e量表(范围6-30),以及使用5点李克特量表的满意度评级。半结构化的汇报访谈探讨了用户体验、感知影响和优化建议。结果:20名晚期癌症患者入组,平均年龄为57岁(SD 12.3), 55%(11/20)为女性,80%(16/20)为非西班牙裔白人,混合癌症类型。在28天的研究中,患者登录MyPainPal的中位数为14 (IQR 8-17)次,完成了中位数8 (IQR 5-14)次症状调查,反映了研究中平均36% (SD 20%)的合格(院外)天数。MyPainPal的可用性和可接受性评分较高(平均SUS 78.3, SD 16.2;平均可接受性e量表24.0,SD 4.4);79%的人认为整体满意度大于或等于4/5。20%的调查产生了警报,促使护士伸出援手。结果显示,5名患者的症状药物发生了改变,2名患者的用药错误得到了纠正。在汇报采访中,许多参与者描述说,干预措施减少了疼痛报告的障碍,并促进了及时和建设性的互动与护理团队的症状管理。一些人指出,干预措施验证了他们的疼痛经历,减少了对阿片类药物使用的耻辱感,促进了与提供者的建设性对话,并促进了自我管理。患者建议对调查进行一些修改,包括减少检查频率和进行更细致的疼痛评估。与会者未充分利用教育资源,并建议将这些资源放在更突出的位置。一些患者建议,当疼痛需求较高且阿片类药物治疗新颖时,MyPainPal应用程序应更早地引入患者的癌症疼痛轨迹。结论:在这项试点研究中,MyPainPal在接受姑息治疗的晚期癌症患者中展示了可行性、可接受性和潜在临床影响的初步证据。该应用程序已经重建和优化,并关注患者的反馈,为未来的疗效研究做准备。试验注册:ClinicalTrials.gov NCT03717402;https://clinicaltrials.gov/study/NCT03717402。
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