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; 15-39years 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 7years 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 (beta=3.00; p=0.02) but not associated with reduced OOP spending (chi2=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 (beta=-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.
View details for DOI 10.1007/s00520-023-07822-3
View details for PubMedID 37395811