The Cancer is My Life - patient and caregiver perceptions of the time toxicity of palliative systemic cancer treatments

Sep 23, 2026

Advanced cancer treatment requires substantial time commitments, yet “time toxicity” has not been fully explored from the standpoint of affected patients and their caregivers. This qualitative study used semi-structured inductive interviews with adults with advanced gastrointestinal cancer and their caregivers, recruiting from metropolitan and regional sites. Thematic analysis identified five themes covering treatment as work, opportunity costs, investing time, decision-making, and tools for managing treatment time. Findings show that coordinating and recovering from treatment burdens daily life beyond contact days.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages9

Reading Time23 min

AccessFree to download

Abstract

Purpose

Methods

Results

Conclusion

Introduction

Time toxicity in cancer care

Need to understand patient and caregiver perspectives

Relevance to gastrointestinal cancers

Cancer care context in Australia

Supportive Care in Cancer (2025) 33:564 [https://doi.org/10.1007/s00520-025-09621-4](https://doi.org/10.1007/s00520-025-09621-4) “The Cancer is My Life”: patient and caregiver perceptions ofthe time toxicity of palliative systemic cancer treatments for advanced gastrointestinal cancers Samuel X. Stevens1,2 · Ella El‑Katateny1 · Richard De Abreu Lourenço4 · Christopher M. Booth5 · Joanne Shaw3 · Janette L. Vardy1,2 Received: 21 November 2024 / Accepted: 2 June 2025 / Published online: 10 June 2025 © The Author(s) 2025 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. Keywords Time toxicity · Advanced cancer · Gastrointestinal cancers · Qualitative · Supportive care Janette L. Vardy and Joanne Shaw shared senior authorship. * Samuel X. Stevens [samuel.stevens@sydney.edu.au](samuel.stevens@sydney.edu.au) 1 Sydney School of Medicine, Faculty of Medicine and Health, The University of Sydney, Camperdown, Sydney, NSW 2008, Australia 2 Concord Repatriation General Hospital, Concord West, NSW, Australia 3 School of Psychology, The University of Sydney, Sydney, NSW, Australia 4 Centre for Health Economics Research and Evaluation, University of Technology Sydney, Sydney, NSW, Australia 5 Departments of Oncology and Medicine, Queen’s University, Kingston, ON, Canada Introduction Cancer care demands substantial time and organisational resources from patients and their caregivers. These time commitments have been labelled “time toxicity” [8], a component of treatment burden that specifically focuses on the impact of time traded to receive cancer care. The concept of time toxicity has rapidly gained traction with oncology and lay audiences, and a growing number of studies assess patient healthcare contact time [2 , 6 , 9 , 13 , 20 , 23–25] . These data suggest adults with advanced solid tumours spend between 10 and 33% of their survival time in contact with the healthcare system. When factoring in healthcare days associated with treatment, systemic treatments with marginal survival benefits can result in less time alive and out of hospital than supportive care alone [8, 12] . This information can inform discussions about the value of can

FAQs

What does the study define as “time toxicity” in palliative systemic cancer treatment?

The study frames time toxicity as the impact of time traded to receive cancer care, viewed as a component of treatment burden. It focuses on healthcare time commitments and their consequences for patients and caregivers.

How was the research conducted and who participated?

Semi-structured qualitative interviews were conducted using an inductive approach. Adults with advanced gastrointestinal cancers who had received palliative systemic therapy and their caregivers were recruited from metropolitan and regional sites and analyzed using thematic analysis.

What were the main themes describing patients’ and caregivers’ experiences?

Five themes were identified: treatment as work; opportunity costs of receiving care; treatment time as an investment; time in treatment decision-making; and tools for managing treatment time. Participants also reported burdens in organizing lives around treatment requirements and noted psychological and understanding-related drivers of perceived time burden.

Sep 23, 2026

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