Exploring How Values of Colorectal Cancer Patients and their Caregivers Influence Treatment Decision-Making

Background 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. Objective 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. Methods 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. Results 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. Discussion 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.