Addressing Patient-Provider Communication Challenges is Vital for Improved Breast Cancer Care

Jane L. Meisel, MD

Although most patients with estrogen receptor–positive, HER2-negative metastatic breast cancer feel relatively well-informed about potential treatment-related adverse effects (TRAEs), a substantial subset express that certain topics are missing or inadequately addressed by their healthcare providers, and that they would like more time to discuss therapeutic options, expected TRAEs and how to manage them, as well as other tolerability concerns.¹ This underscores the need for more effective communication strategies that empower patients to partake in shared decision-making in their care journey, according to Jane L. Meisel, MD.

Using the 55-question, online ESR1 QUAlity of Life Survey 3, Meisel and colleagues evaluated communication dynamics between healthcare providers and patients regarding TRAEs and quality of life (QOL).

Findings presented at the 2023 San Antonio Breast Cancer Symposium (SABCS) demonstrated that 49% of surveyed patients felt extremely comfortable or very comfortable discussing treatment AEs and toxicities with their medical team, 36% felt somewhat comfortable, and 14% felt not so comfortable or not comfortable at all. Moreover, 86% of patients reported feeling well informed about TRAEs compared with 25% who indicated that their healthcare providers did not ask which AEs they would find tolerable or intolerable. Regarding toxicity management, 78% of patients felt extremely prepared, 86% felt well prepared, and 19% felt they did not receive enough guidance from providers.

Key topics missing from provider conversations, according to patients, included rare but serious AEs (44%), how to manage potential AEs (39%), and common AEs to expect (32%). Topics that patients felt were not well-presented by their medical team included the likelihood of experiencing specific AEs (40%), rare but serious AEs to expect (39%), and managing potential AEs (28%).

“From a clinical standpoint, this study highlights the need to present patients with treatment options and [encourage] shared decision-making in the metastatic setting,” said Meisel, who is an associate professor in the Department of Hematology and Medical Oncology and an associate professor in the Department of Gynecology and Obstetrics at Emory University School of Medicine, Atlanta, Georgia. “[Ultimately], it is a chronic disease that these women are suffering from, and [ensuring] QOL is important.”

In an interview with OncLive®, Meisel highlighted several patient-reported gaps in patient-provider communication regarding treatment-related toxicities, emphasized the need for more comprehensive discussions of toxicities paired with tailored educational resources, and encouraged an open dialogue so patients can actively participate in formulating care plans based on individual preferences and toxicity concerns.

OncLive: What was the rationale for evaluating gaps in patient-oncologist communications regarding TRAEs in metastatic breast cancer?

Meisel: Prior data [from the survey showed that] patient-provider communication is sometimes not as optimal as it could be. We wanted to better understand how well patients with metastatic breast cancer feel they are informed about AEs of treatment, how [comfortable] they are communicating with their providers about this, and [whether] they feel [enough time] is allotted to talk about treatment options and what AEs they [could experience on these agents] so that they feel informed. We also wanted to know some of the ways in which patients feel they could be more informed. Do they prefer more written resources? Do they prefer more conversation? How would they like to be informed about these kinds of things?

Please briefly describe how this study was designed.

We took the same 55-question survey and broke down the results into 2 categories, just because it felt like a lot of information to disclose [in one abstract]. As we were going through and summarizing the results, we found that there were 2 topics [being covered]. [One] was this idea of [identifying] treatment AEs and [which ones are] bothering patients. Then there was this other category [focused on] how these conversations [about AEs are] happening, how people are communicating, and how they want to communicate so that we can help people do this better.

How comfortable and well-informed did patients tend to feel when discussing treatment-related toxicities with their providers?

Approximately half of patients felt extremely or very comfortable discussing AEs with their providers, and we thought that was good. One-third felt somewhat comfortable, and then a small number of patients didn’t feel so comfortable or didn’t feel comfortable at all. In terms of information about treatment[-related] toxicities, over 80% of patients said they felt well informed about treatment AEs, but then approximately one-quarter said that providers didn’t ask what AEs they would find tolerable or intolerable.

As a researcher and as a person, I feel that that is so important. When I go to explain any chemotherapy regimen or new endocrine therapy, I first ask what AEs [they’re] most worried about or which ones would be most bothersome to [them], because I can help them figure out ways around that. If they report that hair loss is going to be one of the things that bothers them the most, I’ll choose a regimen that doesn’t cause that [if possible]. If there’s no real way around a regimen that causes that, I talk to them about cold caps or different places they can get wigs. That not only helps improve QOL, because they may be able to minimize an AE they don’t like, but also helps to build trust. Feeling that [someone] really has [their] back and is on [their] side can minimize anxiety and depression [surrounding] the disease and help them feel empowered.

What other perceptions of patient-provider communication did patients report in this study?

Most patients did feel prepared for treatment AEs and felt prepared to manage them. However, there was a smaller fraction that felt they didn’t get optimal guidance on managing potential AEs. Some patients said that they felt they were well informed about the common AEs but were less informed about what rare but serious AEs there might be. Perhaps that was because [their oncologist] didn’t want to tell them things that might scare them? That was reported in almost half of patients, so it is something to think about. If you don’t talk about those things, and then patients read about it or find out about it from other patients or peers, that might make them trust [their provider] less. It’s important to bring up those rare but serious [AEs] and make sure patients understand why you’re less worried about [those AEs] than you would be if they were more common.

What topics did patients feel could be better communicated during such discussions, and how did they prefer to receive this information?

We then asked them questions about communication topics and the areas where patients wanted to learn more. The number 1 thing was patients said that they wanted to spend more time discussing [was] treatment options. So often as providers, we [think that] the cancer is progressing so we’re going to use this [regimen] next. However, sometimes we don’t take the time to explain exactly why we would [use a given approach] next vs something else and may not explain what the other options are. It’s important to say, “I would do this next, but there’s also this and this [option], and here are the differences between these options.” That also helps patients understand [that they have] multiple options, [which] can be confidence building.

AEs were the next thing that people felt they wanted more information on. Additional written or visual resources were something that patients felt they desired the most, so less conversation and more written information [could be a more helpful communication strategy]. It’s helpful for pharmacists as well as oncologists to understand. More information about efficacy [was also requested], and that is something we may not talk about enough. [If there are good data available], it does help patients know what to expect and understand a little bit about how the drug performed in clinical trials or real-world studies, [as long as] they want that information. Patients also said that they would enjoy having patient testimonials and descriptions of toxicities and how they were managed. There are probably multiple ways to provide that. Sometimes patient support groups are helpful resources for that, [and] specific Facebook groups for different drugs are out there. I know patients of mine have gotten useful information from those [resources with regard to] how to manage certain AEs. Thinking about how we can equip our patients not just with our perception of what they might experience, but [by] connecting them with each other virtually or through others [tools or modalities is also important].

How can oncologists better encourage shared decision-making and provide patients with better educational resources in their clinical practice?

We found a lot of these patients on Twitter and Facebook. Because they had connections to folks involved in the study, it may be a relatively well-informed group. We must [mention] the caveat that we’re limited by the people we surveyed here. [Overall], most of these patients did feel well informed about treatment and toxicities, but even in this group, [over] 25% felt that there were important topics that were missing or not addressed adequately [during discussions with their medical team]. The patients just want to have more time to discuss treatment options. [They don’t just want to be told], “Here’s what you should do, and here are the AEs.” [They want to know] what options are out there for them and would love written as well as verbal information about what these AEs are likely to be.

This [interest in] patient testimonials is also interesting. Patients sometimes enjoy hearing from other patients [as it can help them feel like] they’re not alone. Having patient testimonials about how [a given] drug worked, AEs [they experienced], and what those were like, could give patients a [better] sense of what [to expect] in the real world.

What should your colleagues ultimately take away from this research?

Treatment is [meant] to enhance longevity but is also to ensure that people [experience the best] QOL they can for as long as possible. Making sure that treatment decisions are shared and that you’re considering patient preferences in terms of toxicities and dosing schedules [is critical]. That [way], when AEs do arise, you’re creating an open environment [where] patients feel comfortable telling you what they’re experiencing, and you’re able to partner with them to act on it so you can minimize those AEs as much as possible.

Reference

Sammons S, Meisel J, Pluard T, et al. Patient (pt)-provider communication challenges about side effects/toxicities from metastatic breast cancer (mBC) treatments. Abstract presented at: 2023 San Antonio Breast Cancer Symposium; December 5-9, 2023; San Antonio, TX. Abstract PO3-12-05.