Background Decision-making about palliative chemotherapy is complex because treatment goals include increased survival, symptom control, and functional improvement.
Objective To examine whether retrospective assessment by chemotherapy-experienced patients could inform decision-making support for future patients.
Methods 51 patients with thoracic or gastrointestinal malignancy, with no further systemic treatment options, completed the Functional Assessment of Chronic Illness Therapy–Treatment Satisfaction (FACIT-TS) survey and answered free-text questions about their past decisions about therapy.
Results FACIT-TS subscale of treatment effectiveness showed 36% of 49 eligible patients rating effectiveness as being worse than expected, 25% as expected, 37% better. 51% found side effects worse than expected, 19% as expected, and 28% better than expected. Textual analysis of survey responses indicated the majority of patients stood by their decision to take chemotherapy but wished they’d had more information about what to expect. Overall, 55% found chemotherapy to have been worthwhile, 37% not, 8% were undecided.
Limitations Accrual was slower than expected, in part because of a lack of awareness by patients that there were no further chemotherapy options available to them. Selection bias may have favored enrolment from teams open to soliciting patient feedback.
Conclusions Although the majority of patients stood by their decisions about palliative chemotherapy based on their understanding of the therapy at the time of making their decisions, there is a discrepancy between initial expectations about chemotherapy and retrospective assessment of chemotherapy effectiveness and side effects. The introduction of end-of-treatment feedback surveys as a routine quality assurance procedure should be considered.
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