Cerutti Janine, Lent Maria C, Holcombe Randall F, Reblin Maija
Department of Psychological Science, The University of Vermont, Burlington, Vermont, USA.
University of Vermont Cancer Center, University of Vermont, Burlington, Vermont, USA.
Cancer Med. 2025 Jan;14(1):e70488. doi: 10.1002/cam4.70488.
Caregivers play crucial roles in cancer treatment and outcomes. However, little is known regarding how caregivers support patients during cancer clinical trials. The aim of this study was to gain insight into the caregiver experience of rural and urban patients enrolled in cancer clinical trials.
As part of a quality improvement study, 21 patient-caregiver dyads were interviewed using closed and open-ended interview questions. We analyzed quantitative and qualitative data on patient and caregiver perceptions of caregiver contributions and explored differences in the reported caregiving experience between rural and urban participants.
While patient-caregiver dyads showed significant disagreement in the symptoms/medication management domain, with caregivers tending to acknowledge the contribution while patients did not (χ (1, 21) = 5.82, p = 0.016), both groups generally showed agreement in their perceptions of caregiver involvement and reported similar levels of involvement across the other six assessed domains. Qualitative analysis revealed three themes: patient independence, invisible support, and accepted forms of support. Despite patients valuing independence, patients benefited from caregivers' unseen support, and providing emotional support and attending appointments were widely accepted forms of support among patients. No meaningful differences in caregiver contributions were found between rural and urban patient-caregiver dyads.
Our study revealed that caregivers are assisting patients in often unseen and underestimated ways during cancer clinical trials, highlighting their multifaceted role. Cancer clinical trials should implement a family-centered approach, especially for rural caregivers, to enhance patient retention and outcomes.
照顾者在癌症治疗及治疗结果中发挥着关键作用。然而，关于照顾者在癌症临床试验期间如何支持患者，我们所知甚少。本研究的目的是深入了解参与癌症临床试验的农村和城市患者的照顾者体验。
作为一项质量改进研究的一部分，使用封闭式和开放式访谈问题对21对患者-照顾者进行了访谈。我们分析了关于患者和照顾者对照顾者贡献认知的定量和定性数据，并探讨了农村和城市参与者报告的照顾经历的差异。
虽然患者-照顾者在症状/药物管理领域存在显著分歧，照顾者倾向于认可自身贡献而患者则不然（χ(1, 21) = 5.82，p = 0.016），但两组在对照顾者参与的认知上总体上意见一致，并且在其他六个评估领域报告的参与程度相似。定性分析揭示了三个主题：患者独立性、无形支持和可接受的支持形式。尽管患者重视独立性，但他们受益于照顾者无形的支持，并且提供情感支持和陪同就诊是患者中广泛接受的支持形式。农村和城市患者-照顾者之间在照顾者贡献方面未发现有意义的差异。
我们的研究表明，在癌症临床试验期间，照顾者常常以不为人所见且被低估的方式协助患者，凸显了他们多方面的作用。癌症临床试验应采用以家庭为中心的方法，特别是针对农村照顾者，以提高患者留存率和改善治疗结果。
