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

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 NCI-designated United States cancer centers between July 2019–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.