Blee Shannon, Rosenberg Bari, Switchenko Jeffrey M, Hianik Rachel, Thomson Mary Catherine, Dixon Margie, Bilen Mehmet Asim, Pentz Rebecca D
Winship Cancer Institute, Emory University.
Duke University Medical Center, Emory University.
Immunomedicine. 2021 Dec;1(2). doi: 10.1002/imed.1028. Epub 2021 Sep 2.
Immunotherapy terminology is complex and can be difficult for patients to understand, threatening informed consent. The aims of this exploratory study are to determine whether patients understand immunotherapy terminology and if the provider defining the term improves patient understanding.
Conversations between oncology providers and patients discussing immunotherapy were observed(n=39), and technical terms used were noted. With consent, patients were interviewed post-conversation to assess their understanding of these terms(n=39). Comparisons of the terms were conducted using chi-square tests, Fisher's exact tests, or ANOVA where appropriate.
'Immunotherapy' was the most difficult for participants to understand with 48.7% (19/39) correctly defining immunotherapy. 'Immunotherapy agents' was understood 53.8% (14/26) of the time. 'Immune system' was well understood (88.5%;23/26). Providers defined immunotherapy in 97.4% of conversations. There was no correlation between having immunotherapy defined in the conversation, and the likelihood of a correct definition (p=0.487). 'Immune system' was defined in 92.3% of conversations (n=26), and defining it in the conversation was correlated with increased patient understanding (p=0.009).
Our results indicate that patients have difficulty understanding some immunotherapy terminology. Since patient understanding of key terminology is crucial for informed consent and patient care, it is essential to implement interventions to improve understanding.
免疫治疗术语复杂,患者可能难以理解,这对知情同意构成威胁。本探索性研究的目的是确定患者是否理解免疫治疗术语,以及提供者对术语的定义是否能提高患者的理解。
观察肿瘤学提供者与患者之间讨论免疫治疗的对话(n = 39),并记录使用的技术术语。经同意,在对话结束后对患者进行访谈,以评估他们对这些术语的理解(n = 39)。在适当情况下,使用卡方检验、费舍尔精确检验或方差分析对术语进行比较。
“免疫治疗”是参与者最难理解的,只有48.7%(19/39)的人正确定义了免疫治疗。“免疫治疗药物”有53.8%(14/26)的时间被理解。“免疫系统”被很好地理解(88.5%;23/26)。在97.4%的对话中,提供者对免疫治疗进行了定义。对话中对免疫治疗进行定义与正确定义的可能性之间没有相关性(p = 0.487)。在92.3%的对话(n = 26)中对“免疫系统”进行了定义,在对话中对其进行定义与患者理解的增加相关(p = 0.009)。
我们的结果表明,患者在理解一些免疫治疗术语方面存在困难。由于患者对关键术语的理解对于知情同意和患者护理至关重要,因此实施干预措施以提高理解至关重要。