Mirza Raza M, Salim Sabrin, Bell Jennifer A H, Esplen Mary Jane, MacDonald Karen V, Stein Barry D, Marshall Deborah A
Institute for Life Course and Aging, University of Toronto, Toronto, ON, Canada.
MD Program, Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Patient. 2025 Jul;18(4):317-327. doi: 10.1007/s40271-024-00716-4. Epub 2024 Sep 18.
As we adopt value models to inform drug reimbursement, coverage, clinical trials, and treatment choices, aligning these models to reflect patient values and preferences becomes increasingly relevant. In this study, we focus on colorectal cancer (CRC), which is highly prevalent and a leading cause of death in Canada, and new drug treatment options are costly.
The aim of this study was to understand how the values and experiences of people with CRC and their caregivers inform their perspectives about new and emerging colorectal cancer drug treatments.
We applied qualitative methods to identify key personal, social, and system factors about how the values of people with CRC and their caregivers' values influence their treatment decision-making in a more holistic manner. Canadian adults (>18 years) living with non-metastatic or metastatic CRC and caregivers were recruited from oncology clinics and Colorectal Cancer Canada (CCC) using purposive sampling. Participants engaged in structured interviews by telephone. Interviews were transcribed verbatim and analyzed thematically guided by a qualitative phenomenological approach and Sherwin's ethical theory of relational autonomy using NVivo software.
We conducted structured interviews with 12 people with CRC and six of their caregivers, and elicited patient and caregiver values and their influence on treatment decision-making context of key personal, social, and system factors. Thematic analysis of transcripts led to the development of four overarching and intersecting themes that were identified as influencing people with CRC and their caregivers' treatment decision-making: treatment outcomes and effectiveness, intrapersonal and interpersonal factors, quality of life, and survivorship and prognosis.
Our findings suggest intersecting influences of patient-, community-, and social network-, and systemic-level factors that influence patients' decisions on treatment. Perceived clinical benefit, requirements of treatment, available information, the impact of treatment on social relationships and daily life, and the impact of social support were key factors described by participants. To our knowledge, this is the first study to utilize the theory of relational autonomy to understand patient and caregiver values in the context of treatment decisions in CRC. Using these findings, a continued exploration of people with CRC's values in treatment decision-making and how much patients value or weight the different aspects of treatment would help further advance patient care and guide healthcare system decision-making.
随着我们采用价值模型来指导药物报销、覆盖范围、临床试验和治疗选择，使这些模型与患者的价值观和偏好保持一致变得越来越重要。在本研究中，我们聚焦于结直肠癌（CRC），它在加拿大高度流行且是主要死因之一，而新的药物治疗选择成本高昂。
本研究的目的是了解CRC患者及其护理人员的价值观和经历如何影响他们对新兴结直肠癌药物治疗的看法。
我们采用定性方法，以更全面的方式确定关于CRC患者及其护理人员的价值观如何影响其治疗决策的关键个人、社会和系统因素。通过目的抽样从肿瘤诊所和加拿大结直肠癌协会（CCC）招募了患有非转移性或转移性CRC的加拿大成年人（>18岁）及其护理人员。参与者通过电话进行结构化访谈。访谈逐字转录，并使用NVivo软件，在定性现象学方法和舍温的关系自主性伦理理论的指导下进行主题分析。
我们对12名CRC患者及其6名护理人员进行了结构化访谈，得出了患者和护理人员的价值观及其对关键个人、社会和系统因素治疗决策背景的影响。对访谈记录的主题分析产生了四个总体且相互交叉的主题，这些主题被确定为影响CRC患者及其护理人员的治疗决策：治疗结果与有效性、个人内在和人际因素、生活质量以及生存与预后。
我们的研究结果表明，患者、社区、社会网络和系统层面的因素相互影响，从而影响患者的治疗决策。参与者描述的关键因素包括感知到的临床益处、治疗要求、可用信息、治疗对社会关系和日常生活的影响以及社会支持的影响。据我们所知，这是第一项利用关系自主性理论来理解CRC治疗决策背景下患者和护理人员价值观的研究。利用这些发现，继续探索CRC患者在治疗决策中的价值观以及患者对治疗不同方面的重视程度或权衡，将有助于进一步改善患者护理并指导医疗系统决策。
