“The Cancer is My Life”: patient and caregiver perceptions of the time toxicity of palliative systemic cancer treatments for advanced gastrointestinal cancers

Abstract

Purpose Treatment for advanced cancer entails substantial time commitments, which has been labelled the ‘time toxicity’ of treatment, though the perspectives of people affected by cancer are still being established. We aimed to establish patient and caregiver perspectives on the ‘time toxicity’ of palliative systemic treatments. Methods :Semi-structured qualitative interviews were conducted using an inductive approach. Purposively selected adults with advanced gastrointestinal cancers who had received palliative systemic therapy and caregivers were recruited from one metropolitan and regional site. Interviews were analysed using thematic analysis. Results: Twenty patients and ten caregivers participated. Eighty percent were Australian-born, 60% were 55–74 years old, 57% had colorectal cancer, 50% were female, and 50% were regionally situated. Five themes emerged: (1) treatment as work, (2) opportunity costs of receiving care, (3) treatment time as an investment, (4) time in treatment decision-making, and (5) tools for managing treatment time. Participants found it burdensome to organise their lives around treatment requirements. Perception of time burdens related to understandings of treatment benefit, experience of downsides, and psychological reactions to illness. Time spent coordinating and recovering from treatment had a substantial impact on participants’ lives outside of contact days. However, participants valued the potential benefits of treatment and described healthcare time as a modifier, rather than a driver, of treatment decision-making. Conclusion: This qualitative analysis contributes a foundational understanding of perceptions, sources, and impacts of healthcare time burdens in an Australian context. Further research will identify, assess, and address modifiable sources of time burdens in cancer care.