National survey of patient perspectives on cost discussions.
Authors: Lam Anh , Nipp Ryan David , Hasler Jill S. , Hu Bonnie Y , Zahner Gregory J , Robbins Sarina , Wheeler Stephanie B. , Tagai Erin K , Miller Suzanne M. , Peppercorn Jeffrey M. 
Published: October 2023

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Background: Patients with cancer often experience financial concerns and may seek help from copay assistance programs (CAPs). We sought to describe CAP recipients’ experiences and preferences for cost discussions. Methods: From 10-11/2022, we conducted a national, cross-sectional survey of CAP recipients with a cancer diagnosis or autoimmune condition, which asked about patient perspectives on cost discussions (desire to discuss costs, want doctors to consider out of pocket [OOP] costs, believe doctors should ensure patients can afford treatment prescribed, and report their doctor had discussed costs). We used multivariable logistic regression models to describe factors associated with patient perspectives on cost discussions and explored associations among cost discussion perspectives with financial toxicity (COST tool), depression/anxiety symptoms (PHQ-4), and health literacy. Results: Among 1,566 participants, 71% had cancer and 29% had an autoimmune condition. Of those with cancer, 71% had a hematologic malignancy, 19% had metastatic solid tumor, 4% had non-metastatic solid tumor, and 6% did not disclose cancer type. Although 62% of respondents desired cost discussions, only 32% reported that they took place. Over half (52%) of recipients wanted doctors to consider OOP costs, and 61% believed doctors should ensure patients can afford treatment prescribed. Those with a hematologic malignancy (OR 0.63, p=.007) and those of Hispanic ethnicity (OR 0.42, p=.020) were less likely to desire cost discussions. Those with a hematologic malignancy or metastatic solid tumor were less likely than those with an autoimmune condition to want doctors to consider OOP costs (OR 0.50, p<.001; OR 0.64, p=.040, respectively) and less likely to believe doctors should ensure patients can afford treatment (OR 0.56, p=.001; OR 0.52, p=.004, respectively). Those with a hematologic malignancy (OR 0.59, p=.004), Hispanic ethnicity (OR 0.24, p=.009), or more comorbidities (OR 0.55, p=.011) were less likely to report having cost discussions. Patients with severe financial toxicity were more likely to desire a cost discussion (OR 1.79, p<.001) and to want doctors to consider OOP costs (OR 1.43, p=.017). Depression symptoms were associated with belief that doctors should ensure patients can afford treatment (OR 1.47, p=.038). Those with lower health literacy were more likely to desire discussing costs (OR 1.38, p=.021) and believe doctors should ensure patients can afford treatment (OR 1.32, p=.047). Conclusions: In this large sample of CAP recipients with cancer and autoimmune conditions, most reported a desire for cost discussions and felt that doctors should consider OOP costs while ensuring patients can afford treatment prescribed. However, under one third reported cost discussions took place. We found factors associated with these outcomes, which may help to inform future work regarding patient-clinician discussions about financial concerns.