Misunderstanding immunotherapy: An analysis of provider-patient conversations.
Authors: Shannon M. Blee, Bari Rosenberg, Jeffrey M. Switchenko, Rachel Hianik, Mary Catherine Thomson, Margie D. Dixon, Mehmet Asim Bilen, Rebecca D. Pentz
Journal: Journal of Clinical Oncology (2021)

e18638 Background: Immunotherapy terminology is often complex and can be difficult for patients to understand, threatening both informed consent and patient-centered communication. Improving patient-centered communication is fundamental to fostering a quality provider-patient relationship and has been shown to positively impact the length of time to initiating treatment and to optimize patient outcomes. The aim of this study is to determine whether patients understand basic immunotherapy terminology and if a provider defining the term improves patient understanding. Methods: Conversations between oncology providers and patients discussing immunotherapy for the first time, either as standard of care or as part of a clinical trial, were observed, audio recorded and transcribed (n = 39). Technical terms used in the conversation were noted by the research assistant. With consent, patients were interviewed post-conversation to assess their understanding of these technical terms used by the provider (n = 39). Comparisons of the terms (correct vs. incorrect) were conducted using chi-square tests or Fisher’s exact tests, where appropriate, for categorical variables, and using ANOVA for continuous variables. Results: Participants were mostly white (79.5%), had some college education (55.3%), had a personal income of &gt; = $50k (56.7%), and had a family member with cancer (54.1%). The term ‘immunotherapy’ was the most difficult term for participants to understand with less than half (19/39; 48.7%) correctly defining it. The only demographic characteristic that was significantly correlated with understanding ‘immunotherapy’ was having a family member with cancer (p = 0.031). Immunotherapy agents, such as Pembro and Nivolumab, were defined correctly by patients 65% (19/29) of time). Interestingly ‘immune system’ was well understood (23/26; 88.5%). Providers defined immunotherapy in 97.4% of conversations. However, there was no correlation between having a provider define immunotherapy in the conversation, and the likelihood of participants correctly defining the term in the post-conversation interview (p = 0.487).The immune system was defined in 92.3% of conversations (n = 26), and defining immune system in the conversation was correlated with increased patient understanding (p = 0.009). Conclusions: Analysis of patient-provider conversations shows that patients have difficulty understanding some immunotherapy terminology. Since immunotherapy is a relatively new therapy, it may be more difficult for providers to translate it into lay language, which could be why patients lack understanding of ’immunotherapy’, even when provided with a definition. Since patient understanding of key terminology is essential for not only enhancing patient-centered communication, but for improving informed consent and optimizing patient outcomes, educational interventions should be developed to improve understanding.