How, When, and With Whom Should Cost of Care Conversations Occur?

Preferences of Two Distinct Cancer Survivor Groups

Maria Pisu, PhD; Matthew P. Banegas, PhD, MPH; Margaret I. Liang, MD, MSHS; Leah Tuzzio, MPH; Nora B. Henrikson, PhD, MPH


J Oncol Pract. 2020;16(9):e912-e921. 

In This Article

Abstract and Introduction


Purpose: Cost of care (CoC) conversations should occur routinely in oncology practice. However, patient preferences about with whom, when, and how to have these conversations are missing and preferences may vary across patient populations.

Methods: We performed a secondary qualitative analysis of quotes from interviews with 28 cancer survivors from two health care settings (Kaiser Permanente Washington and O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham [UABCCC]). A targeted approach searched for three constructs: (1) Who should have CoC conversations with patients? (2) When should CoC conversations occur? and (3) How should CoC conversations happen?

Results: Interviewees were similar in age and education, but UABCCC participants had more racial/ethnic minority representation and financial distress. Within each construct, themes were similar across both groups. As to who should have CoC conversations, we found that (1) providers' main role is medical care, not CoC; and (2) care team staff members are a more appropriate choice to address CoC needs. About the question of when, we found that (3) individuals have strong convictions about when and if they want to discuss CoC; and (4) CoC information and resources need to be available when patients are ready. About the question of how, themes were (5) provide estimates of anticipated out-of-pocket costs and insurance coverage; (6) provide reassurance, sympathy, and concrete solutions; and (7) because of their sensitivity, conduct CoC conversations in a comfortable, private space.

Conclusion: These findings offer general guidance as to who should conduct CoC conversations and when and how they should occur, with applicability across different patient populations.


Discussing cost of care (CoC) with patients with cancer is a recommended component of quality care.[1] However, CoC conversations do not occur routinely,[2–4] and many barriers, such as providers' lack of knowledge about or time to address costs and perceived patients' embarrassment or reluctance to discuss costs, prevent incorporating these conversations into practice.[5,6] Currently, there is no specific guidance about how to overcome these barriers or about who, when, and how is most appropriate and effective to initiate and conduct CoC conversations in oncology practices. Previously, we identified the essential elements of CoC conversations in one oncology setting; these included a reassurance and action framework.[7] Specifically, patients desired reassurance that CoC would not negatively affect receipt of quality care and an action plan with tangible options, such as securing payment plans or accessing financial assistance programs. We also elicited patient preferences regarding the practical logistics of CoC conversations, including format, content, timing, and providers with whom to have these conversations.[7] However, these preferences may vary across patient populations and the health systems in which they receive care: thus, whether the logistics of CoC conversations should be the same across oncology settings is largely unknown.

To begin addressing this knowledge gap, we present findings from qualitative interviews with diverse cancer survivors who received care in different clinical settings and geographic regions.[8,9] Specifically, we aimed to explore the unique preferences about who in the clinic should discuss CoC with patients, when along the disease and treatment trajectory CoC conversations should occur, and how the conversations should be conducted (ie, preferences for content and flow).