Abstract
Purpose
This study aims to evaluate the associations between patient-provider cost discussions with patient-reported out-of-pocket (OOP) spending and long-term financial toxicity (FT) among adolescent and young adult (AYA; 15–39 years old) cancer survivors.
Methods
Using a cross-sectional survey, we assessed the themes and quality of patient discussions with providers about financial needs and general survivorship preparation, quantified patients’ levels of FT, and evaluated patient-reported OOP spending. We determined the association between cancer treatment cost discussion and FT using multivariable analysis. In a subset of survivors (n = 18), we conducted qualitative interviews and used thematic analysis to characterize responses.
Results
Two hundred forty-seven AYA survivors completed the survey at a mean of 7 years post treatment and with a median COST score of 13. 70% of AYA survivors did not recall having any cost discussion about their cancer treatment with a provider. Having any cost discussion with a provider was associated with decreased FT (β = 3.00; p = 0.02) but not associated with reduced OOP spending (χ2 = 3.77; p = 0.44). In a second adjusted model, with OOP spending included as a covariate, OOP spending was a significant predictor of FT (β = − 1.40; p = 0.002). Key qualitative themes included survivors’ frustration about the lack of communication related to financial issues throughout treatment and in survivorship, feeling unprepared, and reluctance to seek help.
Conclusion
AYA patients are not fully informed about the costs of cancer care and FT; the dearth of cost discussions between patients and providers may represent a missed opportunity to reduce costs.
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Data availability
Data will be available upon request and proper approval.
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Funding
This analysis was supported by the following sources: Memorial Sloan Kettering’s Medical Student Summer Research Fellowship Program sponsored by NIH/NCI 5R25CA020449, the Chanel Endowment to Support Survivorship Research, and NIH/NCI Cancer Center Support Grant P30 CA008748.
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All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Victoria Wu, Catherine Benedict, Fumiko Chino, and Bridgette Thom. The first draft of the manuscript was written by Victoria Wu, and all authors commented on subsequent versions of the manuscript. All authors read and approved the final manuscript.
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This study was conducted in accordance with the Declaration of Helsinki. This study was reviewed by the Memorial Sloan Kettering Institutional Review Board as exempt research.
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Because all data were collected anonymously, documented subject-specific was not sought; however, potential participants were informed about the voluntary nature of the study and that completing the survey implied consent.
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Participants were made aware that their responses were anonymous, that they could leave the study at any time, that their choice to participate would not impact any care they received, and that findings from the study may be shared through professional publications and presentations.
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Wu, V.S., Benedict, C., Friedman, D.N. et al. Do discussions of financial burdens decrease long-term financial toxicity in adolescent and young adult cancer survivors?. Support Care Cancer 31, 434 (2023). https://doi.org/10.1007/s00520-023-07822-3
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DOI: https://doi.org/10.1007/s00520-023-07822-3