Advanced cancer treatment decisions and their patient-facing financial burdens: a thematic analysis

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Abstract
Background: Most research about the high costs of cancer care has focused on characterizing and mitigating the financial hardship patients and families experience after cancer-directed therapy. Few studies have examined how these costs prospectively influence treatment decision-making. Even fewer address how costs impact decisions about symptom-directed therapies. We aim to describe how patient-facing costs of care influence decisions about cancer-directed and symptom-directed therapies for advanced cancer. Materials and methods: We analyzed semi-structured interviews with patients, care partners, clinicians, and health system leaders and clinical observations collected by investigators at 3 National Cancer Institute designated US cancer centers between July 2019 and May 2021. Two analysts conducted thematic analysis based on the Model of Financial Burden After Cancer Diagnosis. Results: Analysis of 157 interviews and 92 observations identified 4 themes: (1) insurance influenced treatment choice and location; (2) medical costs influenced treatment choice, location, and timing; (3) non-medical costs influenced treatment location and timing; and (4) employment changes influenced treatment choice and timing. Patients and care partners emphasized costs of symptom-directed therapies; staff focused on costs of cancer-directed therapies. Patients and care partners described how employment influenced decisions about starting or continuing cancer-directed therapy, while staff noted how employment affected decisions about symptom-directed therapy. Conclusions: Patient-facing costs profoundly influence treatment decisions in advanced cancer care, but differences in perspective among patients, care partners, and clinicians can lead to oversights in treatment decision-making. Eliciting and incorporating patients’ varied priorities into treatment decisions can minimize these oversights, better align treatment with goals of care, and reduce financial hardship.

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