“The Cancer is My Life”: patient and caregiver perceptions of the time toxicity of palliative systemic cancer treatments for advanced gastrointestinal cancers
Bibliographic record
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.013 | 0.026 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.006 | 0.007 |
| Scholarly communication | 0.003 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.002 | 0.003 |
| Insufficient payload (model declined to judge) | 0.003 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".