Division of Hematology, Oncology, and Transplantation, University of Minnesota, Minneapolis.
Division of Hematology and Oncology, University of Alabama at Birmingham.
JAMA Netw Open. 2024 Nov 4;7(11):e2447649. doi: 10.1001/jamanetworkopen.2024.47649.
Cancer and its care impose significant time commitments on patients and care partners. The oncology community has only recently conceptualized these commitments and the associated burden as the "time toxicity" of cancer care. As the concept gains traction, there is a critical need to fundamentally understand the perspectives of multiple stakeholders on the time burdens of cancer care.
To explore time-consuming aspects of cancer care that were perceived as burdensome, identify the individuals most affected by time burdens of cancer care, and evaluate the consequences of these time burdens.
DESIGN, SETTING, AND PARTICIPANTS: Participants in this qualitative analysis were recruited from a National Cancer Institute-designated cancer center in Minnesota, where semistructured qualitative interviews were conducted from February 1 to October 31, 2023. Purposive and criterion sampling methods were used to recruit patients (adults with advanced stage gastrointestinal cancer receiving systemic cancer-directed treatment), care partners (patient-identified informal [unpaid] partners), and clinicians (physicians, physician assistants, nurse practitioners, nurses, social workers, and schedulers). Data were analyzed from February 2023 to February 2024.
Thematic analysis was conducted with a hybrid (inductive and deductive methods) approach. Themes, subthemes, and illustrative quotations are presented.
Interviews included 47 participants (16 patients [8 aged ≤60 years; 12 women (75.0%)], 15 care partners [12 aged ≤60 years; 9 women (60.0%)], and 16 clinicians [11 women (68.7%)]). A total of 31 subthemes were identified that were grouped into 5 themes. Theme 1 captured time burdens due to health care outside the home (eg, travel, parking, and waiting time), while theme 2 identified the often invisible tasks performed at home (eg, handling insurance and medical bills, receiving formal home-based care). Theme 3 explored how care partners are affected alongside patients (eg, burdens extending to the wider network of family, friends, and community) and theme 4 represented the consequences of time burdens (eg, demoralization, seemingly short visits turned into all-day affairs). Finally, theme 5 referenced positive time spent in clinical interactions and hope for change (eg, patients value meaningful care, the "time toxicity" label is a spark for change).
This qualitative analysis identifies key sources and effects of time toxicity, as well as the populations affected. The results of this study will guide the oncology community to map, measure, and address future time burdens.
癌症及其治疗给患者和护理伙伴带来了巨大的时间负担。肿瘤学界直到最近才将这些承诺和相关负担概念化为癌症护理的“时间毒性”。随着这一概念的流行，我们迫切需要从多个利益相关者的角度来深入了解癌症护理的时间负担。
探索被认为是负担的癌症护理耗时方面，确定受癌症护理时间负担影响最大的人群，并评估这些时间负担的后果。
设计、地点和参与者：本定性分析的参与者是从明尼苏达州的一家美国国立癌症研究所指定的癌症中心招募的，该中心于 2023 年 2 月 1 日至 10 月 31 日进行了半结构式定性访谈。采用目的性和标准性抽样方法招募患者（接受系统癌症治疗的晚期胃肠道癌症成年患者）、护理伙伴（患者指定的非正式（无薪）伙伴）和临床医生（医生、医生助理、执业护士、护士、社会工作者和调度员）。数据于 2023 年 2 月至 2024 年 2 月进行分析。
采用混合（归纳和演绎方法）方法进行主题分析。呈现主题、子主题和说明性引语。
访谈包括 47 名参与者（16 名患者[≤60 岁 8 名；女性 12 名（75.0%）]，15 名护理伙伴[≤60 岁 12 名；女性 9 名（60.0%）]，16 名临床医生[11 名女性（68.7%）]）。确定了 31 个子主题，分为 5 个主题。主题 1 描述了因院外医疗保健而产生的时间负担（例如，旅行、停车和等待时间），而主题 2 确定了在家中进行的通常无形的任务（例如，处理保险和医疗账单、接受家庭为基础的正式护理）。主题 3 探讨了护理伙伴如何与患者一起受到影响（例如，负担扩展到更广泛的家庭、朋友和社区网络），主题 4 代表了时间负担的后果（例如，士气低落，看似短暂的访问变成了全天的事情）。最后，主题 5 提到了临床互动中花费的宝贵时间和对变革的希望（例如，患者重视有意义的护理，“时间毒性”标签是变革的契机）。
这项定性分析确定了时间毒性的关键来源和影响，以及受影响的人群。这项研究的结果将指导肿瘤学界绘制、衡量和解决未来的时间负担。
