Bolajoko Opeyemi, Fullwood Dottington, Colissa Mahin, Merriweather Arnold, Merriweather Callie, Odedina Folakemi T
Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Jacksonville, FL, USA.
Inclusive Cancer Care Research Equity (iCCaRE) for Black Men Consortium, Jacksonville, FL, USA.
Cancer Control. 2024 Jan-Dec;31:10732748241305581. doi: 10.1177/10732748241305581.
Decentralized clinical trials (DCTs) provide the opportunity to bring interventional studies closer to participants in their homes or a suitable location closer to prospective participants, thus increasing participants' diversity, accrual, retention, health care, and research access. However, little is known about the burden of caring for cancer patients participating in DCTs. This article describes how DCTs might affect the caregivers of cancer patients. The points discussed include how technological challenges for those without adequate digital literacy can overburden participants and their caregivers at home, as well as managing and optimizing research logistics and safe handling of samples. In addition, the shift in labor from the study personnel to the participants and their caregivers in a bid to complete several study procedures on their own can increase the care burden, especially if not well incentivized. Therefore, it is important to accumulate evidence on ways to optimize DCTs, especially in the home environment, without increasing the burden on caregivers, who will be an integral part of the study team and support the research at home.
去中心化临床试验（DCTs）提供了一个机会，使干预性研究更贴近参与者的家庭或更接近潜在参与者的合适地点，从而增加参与者的多样性、招募率、留存率、医疗保健机会以及研究可及性。然而，对于照顾参与DCTs的癌症患者的负担，我们知之甚少。本文描述了DCTs可能如何影响癌症患者的照顾者。讨论的要点包括，对于那些缺乏足够数字素养的人来说，技术挑战如何给在家中的参与者及其照顾者带来过重负担，以及研究后勤管理与优化和样本的安全处理。此外，为了让参与者及其照顾者自行完成多项研究程序，劳动力从研究人员转移到参与者及其照顾者身上，这可能会增加照顾负担，尤其是在没有得到充分激励的情况下。因此，积累关于优化DCTs方法的证据很重要，特别是在家庭环境中，同时又不增加照顾者的负担，照顾者将成为研究团队不可或缺的一部分，并在家中支持研究工作。
