This is the first set of surveys to evaluate communication gaps regarding trastuzumab biosimilars. Our findings reveal a lack of synchronicity between actual patient experiences and stated goals of oncology care, as evidenced in current practices of switching to biosimilars, at times, with lacking and/or inconsistent patient notification. We report three categories of findings: (1) types of patient experiences, (2) lack of common ground between patients and oncologists, and (3) patients and oncologists highlighting the need for more information.
To inform tailored interventions, need to elicit and characterize patient experiences
Patient reported a variety of experiences with trastuzumab biosimilars, including being switched without notification, resulting in negative emotions. Some patients noticed on their own that they had been switched—in their chart or by reading insurance papers. This is evidence for a lack of consistent processes in how healthcare systems are managing communication with patients regarding switches to trastuzumab biosimilars, a systems-level issue. Furthermore, these experiences are inconsistent with best practices of patient-centered communication. A 2013 narrative review reported providing information and responding to emotions as two (among others) best practices in physician communication . Switching to trastuzumab biosimilars for patients with breast cancer is a problem space in need of effective communication solutions.
Oncologists need information
The objective of the oncologist survey was two-fold—not only to compare with patient responses, but to identify patient care barriers and gaps experienced by oncologists. Oncologist responses highlight that the decision to switch patients to trastuzumab biosimilars is often not made by them, but rather by the healthcare systems or by insurance companies. Some oncologists reported that this switch was done without their knowledge. Despite their central role in cancer patient care, oncologists lack complete information. It is important to identify what information oncologists need both for their own situational awareness and to foster relationships with their patients. Ultimately, effective communication about trastuzumab biosimilars is not the sole responsibility of individual oncologists, but rather an objective in need of systems-level interventions.
Patient and oncologists need to be on the same page
Patients and oncologists responded similarly (on the negative end of the scale) to items on the following topics: patient involvement, patient emotional adjustment, and hospital being trusted. These findings provide insight into operational gaps on which both patients and oncologists agree. In light of documented physician burnout  related to the pandemic as well as issues such as longer hours and higher volume of clerical tasks , the negative response of surveyed oncologists to trusting the hospital/center to make the right decision about using biosimilar trastuzumab is telling. Our work identifies an opportunity for better system support for both oncologists and patients. In the other two instances of agreement, the oncologist responses provide insight into appreciation that patients are impacted by the communication (or lack thereof) that underlies decision-making processes.
However, our data otherwise suggest that patients and oncologists are not on the same page. Specifically, the five topics that yielded different responses (with patients’ responses being more negative than oncologists’) are the following: (1) patient opportunity to ask questions; (2) patient receiving adequate resources; (3) cancer being treated as effectively; (4) patient being worried; and (5) the switch being a minor change. These findings highlight that there may be a fundamental lack of knowledge and comprehension by patients regarding the safety and efficacy of trastuzumab biosimilars, as well as a lack of appreciation by oncologists of the impact to the patient on switching medications. Patient educational materials may have the potential to put some patient concerns to rest, thereby alleviating the need for more time to ask questions. However, the patient responses regarding the importance of this switch to their care does not reveal why this change is perceived as important and further conversation may be needed between the oncologist and the patient.
Patients need information to mitigate patient work
Only 11% of surveyed patients reported being satisfied with the information they received. Patients in our data set report wanting to have information on trastuzumab biosimilars, such as printed materials (32%), more time between notification and treatment (35%), and better understanding of role of biosimilars in treatment (40%). Approximately 46% of patients reported learning more about biosimilars through self-directed learning on the internet than through oncologist/provider-directed methods. We also identified evidence of negative emotions regarding biosimilar switching. These findings suggest that ineffective communication about trastuzumab biosimilars contributes to patient work. Defined as behavioral, cognitive, and emotional effort exerted by the patient in navigating not just their care, but their life, patient work is a construct that has been receiving attention in the last decade . Examples include information seeking, navigating associated relationships and logistics of doing so, and managing emotions—all activities that are time consuming and effortful .
Further, self-directed information seeking (outside of the healthcare team) suggests that the healthcare team is not central to the patient’s understanding of their care, thereby making the patient more vulnerable to misinformation, incomplete information, and lack of comprehension.
In addition, patients have the right to be informed regarding their treatment. Thus, the issue of lack of notification about switching to trastuzumab biosimilars is an ethical one. Lack of notification equates to lack of choice and opportunity to engage, as well as the absence of shared decision-making (or the perception of) between the patient and their care team. Without information about their care, patients do not have agency, further conflicting with the goals of patient-centered care.
Study limitations and strengths
Several study limitations need to be considered. Challenges in recruiting necessitated a lengthy timeline for data collection. We believe that recruitment challenges resulted from survey fatigue during the COVID-19 pandemic , as well as the nature of the research question that impacts a relatively small proportion of patients with breast cancer. Patient responses were limited to those who are active on social media resulting in a convenience sample. Further, the patient sample includes a low proportion of minorities, limiting the ability to generalize findings beyond White patients. However, although convenience samples have limited generalizability, they can be useful in understanding a phenomenon of interest. Specifically, recent research highlights that convenience samples correlate with random probability samples [24, 25]. Additionally, it is possible that the sample was biased in that people who have experienced challenges with trastuzumab biosimilars may have self-selected for the survey. Oncologist responses comprised a limited sample that are a reflection of the difficulty in recruiting healthcare providers for research studies [26, 27].
The strength of the current study is that it is the first of its kind to elicit and characterize patient and oncologist experiences in non-medical switching to trastuzumab biosimilars, and to compare those with oncologist perception of the patient experience.
Directions for future research
Research is needed to further investigate the role of trust in patient-oncologist relationships, and the impact of effective communication on patient emotional response. Literature suggests that trust, a dynamic and evolving process, is central to the patient-provider relationship . Healthcare communication studies have highlighted the positive relationship between communication and trust . In future research, it is important to explore the impact of the various patient experiences with trastuzumab biosimilars on the patient-oncologist relationship, perception of shared decision-making, being part of a team (characterized by common goals and mutual dependencies), and agency.
Critically, there is an urgent need to mitigate avoidable emotional distress to patients—especially populations that are already vulnerable on multiple levels. By characterizing the negative emotional consequences such as feelings of vulnerability and powerlessness of not being informed and engaged, we can begin to work toward tailored communication interventions. Not only is mental health at stake, but literature highlights its relationship with health behaviors including adherence to treatment .
Finally, to develop tailored interventions, it is necessary to characterize the experience of not just clinicians (as traditional) but patients and their families and caregivers through research methods such as surveys and interviews focused on eliciting lived experiences and unpacking decision points and knowledge gaps . Findings should be used to inform the development and evaluation of interventions, resulting in practices that are tailored to the needs of patients and clinicians .