Understanding immunotherapy terminology: An analysis of provider‐patient conversations

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. Good patient/provider communication is important for good informed consent, patient adherence to treatment and patient outcomes.


INTRODUCTION
The use of immunotherapy as a cancer treatment is rapidly expanding.
Therefore, it is important that patients understand basic immunotherapy terminology. Misunderstanding of medical jargon can lead to lapses in communication, affecting treatment adherence, 1-3 treatment initiation 4 , and patient outcomes. 5 Most important, in order to give informed consent for treatment, patients need to have a basic comprehension of terminology to ensure that they understand the potential risks and benefits of immunotherapy, its side effects, and what other options are available. 6,7 Patients' lack of understanding of basic immunotherapy terminology compromises true informed consent and their ability to make informed decisions about their treatment plan.
Patients' misunderstanding of medical terminology is a welldocumented issue across a multitude of specialties, including oncology. [8][9][10][11][12] This is an issue that is not only prevalent in Englishspeaking countries, but the use of medical jargon has also been shown to negatively impact patient understanding in multiple countries. [13][14][15] In Israel, one study found that providers use of medical terminology was the primary source of patient misunderstanding of discharge instructions in the Emergency Department. 15 A study conducted in Africa determined that both the use of medical terminology and the difference in spoken language between patients and physicians contributed to patients' lack of understanding. 14 Previous studies examining contributing factors to patient's lack of understanding have shown that providers sometimes struggle to communicate clearly with their patients 16 , often misestimating their patients' level of understanding. 17,18 Many providers also find it difficult to translate complex medical terminology into lay language, jeopardizing good communication between the patient and the provider. 19  The provider-patient conversation was observed and audiorecorded by the research assistant, who noted during the conversation when a provider used a technical term or listed a side effect. The post-conversation patient interview was modeled after a previous study and revised after a literature review. 22 In order to assess patient understanding, the patient was asked to: Describe how immunotherapy works, describe the immune system, provide a definition for the All data sources were audio-recorded, transcribed and qualitatively analyzed using the standard content analysis method and the qualitative data analysis software MAXqda (VERBI, GmbH, Berlin, Germany). 23,24 Code books were created for each data source by two investigators, approved by the PI, and then all data sources (the patient/provider conversations, patient interview and provider interview) were double coded. Discrepancies (zero for provider-patient conversation; five for patient interviews, zero for provider interviews) were resolved by consensus. Frequencies of themes were tabulated.
Correct understanding of the technical terms and side effects was first determined independently by the two coders, and then reviewed by an oncologist (MAB).
Descriptive statistics such as mean, median, standard deviation, and range were reported for continuous variables, and frequencies and percentages were reported for categorical variables. 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. As this is an exploratory study that was not hypothesis driven, we had a smaller sample size and therefore we did not attempt more complex models, such as multivariate models. Statistical significance was assessed at the 0.05 level, and the statistical analysis was conducted using SAS 9.4 (SAS Institute Inc., Cary, NC, USA). For terms mentioned more than 10 times (except for immunotherapy agents since multiple agents were discussed in one patient/provider interview, with some terms understood and other not understood), we assessed whether a physician defining a term correlated with improved understanding.

Forty-eight patients were approached about participation in this study
and 39 (81%) patients consented to participate. Three of the patients approached were ineligible either due to cognitive impairment resulting in an inability to understand the researcher's explanations, or because immunotherapy was not being discussed during their visit.
Five participants refused due to time constraints or feeling unwell.
One patient was excluded since he was not from sites included in the approved protocol. Participants were patients from melanoma, breast, Combination treatment (n They also identified eight barriers to communicating with patients about immunotherapy shown in Table 5.
To find solutions to the noted barriers, providers were asked about the potential helpfulness of eight different educational tools in explaining immunotherapy to patients. One provider did not answer any questions about solutions and therefore was excluded in the count.

DISCUSSION
For proper informed consent, patients need to have a basic understanding of the technical terms used by their provider and a general knowledge of the proposed treatment. 7 The results from this exploratory study show that patients may not understand some of the technical terms used by their providers in initial discussions about immunotherapy. Although providers defined the term "immunotherapy" in the majority of conversations, most patients (51%) still had difficulty providing a correct definition of the term in the post-conversation interview. Similarly, the four immunotherapy agents were defined in all the conversations in which they were mentioned but understood in a little over half (53.8%). "Immune system" was better understood (89%) and a provider definition was correlated with participants correctly defining the term. These differences in participant understanding may simply be due to "immune system" being a lay term, while "immunotherapy" and the particular immunotherapy agents mentioned, are new terms and therefore are not as readily understandable. Additionally, since immunotherapy is a more complex treatment, it may be more difficult for providers to translate it into readily understandable language, which is why a provider definition does not work to increase understanding. 19 Not surprisingly, previous experience with cancer treatment, rather than a definition, helped improve understanding; participants who had a family member with cancer were more likely to correctly define immunotherapy than participants who did not. Our results are congruent with past studies that showed patients struggle to understand medical terminology. 8,9,11,25 As the providers noted in the post-conversation interview, there are many barriers that pose challenges to effectively communicating with patients about immunotherapy, with the most common being misconceptions about its benefits and misinformation about its use. As proper communication impacts not only informed consent, but treatment adherence, 1-3 treatment initiation 4 , and patient outcomes 5 , it is imper-ative to improve provider-patient communication. We suggest two methods of improving communication ( Figure 1). First, our past studies have provided evidence that provider use of metaphors may work to enhance patient understanding of terminology. 26,27 Hianik et al., showed that more than half of participants understood metaphors used for describing how immunotherapy works. 27 These findings offer a way to improve patient understanding during a conversation with their provider.
Second, the study team is in the process of developing short, animated videos explaining the immune system, immunotherapy, and immune cells, a technique shown to be equally successful in improving understanding of terms about chemotherapy. 28 The chemotherapy videos proved to be successful in both urban and rural populations, indicating that they appropriate and effective across varying demographic groups. 28,29 Although these immunotherapy videos have not yet been tested, we believe that the immunotherapy videos could be equally as successful at improving patients' understanding of these complex concepts given that video-based interventions have been proven effective in a multitude of settings. 30 • Have been shown to successfully enhance patient misunderstanding of terminology across multiple specialties, including prostate and breast cancer.
• Videos are short in length .
• Readily understandable to a lay person.
• Requires use of technology to access.

F I G U R E 1 Validated interventions to enhance patient understanding of medical terminology and their benefits/drawbacks
definition. Since patient understanding of key terminology is essential for adequate informed consent, it is essential to implement validated interventions to improve understanding.