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SABCS 2020: Doctors May Not Recognize the Severity of Radiation Side Effects
Reshma Jagsi, M.D.
January 19, 2021

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Dr. Reshma Jagsi is the Newman Family Professor and deputy chair of the department of radiation oncology and director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.

At the 2020 San Antonio Breast Cancer Symposium, she presented results from a study looking at how well doctors recognized radiation treatment side effects among people treated for breast cancer.

Listen to the episode to hear Dr. Jagsi explain:

  • why the researchers decided to look at this topic
  • why certain groups, including younger women and women who are Black or of a race other than Asian or white, were more likely to have their doctors assess their side effects as less severe than they really were
  • how patients can help make sure their doctors understand the severity of any side effects they’re having

Running time: 12:59

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Show Full Transcript

Jamie DePolo: Hello, thanks for listening. Dr. Reshma Jagsi is the Newman Family Professor and deputy chair of the department of radiation oncology and director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. At the 2020 San Antonio Breast Cancer Symposium, she presented results from a study looking at how well doctors recognize radiation treatment side effects among people treated for breast cancer. She joins us today to talk about the study. 

Dr. Jagsi, welcome to the podcast. 

Dr. Reshma Jagsi: Thanks so much. 

Jamie DePolo: To start, could you give us an overview of the study, and tell us what made you decide to look at this topic? 

Dr. Reshma Jagsi: Absolutely. So, we have led prior research as part of our Michigan Radiation Oncology Quality Consortium here in the state of Michigan that has shown that a large proportion of patients experience some pretty substantial side effects during their radiation treatments for breast cancer and that this varied by age and race. 

And since physicians can’t help patients with symptoms that we don’t know they’re having, we felt it was important to do a study to evaluate whether there were times when patients’ symptoms weren’t being recognized. And so we looked at physician and patient reports and the side effects they were experiencing in a large cohort of patients receiving radiation treatment for breast cancer across the state of Michigan in our consortium in order to see whether there were cases where patients were reporting side effects that their physicians were not. 

Jamie DePolo: So it sounds like, from the results, that people who were younger and either Black or of a race other than Asian or white were more likely to have their doctors assess their side effects as less severe than they really were. So, why do you think that is? 

Dr. Reshma Jagsi: We were really quite disappointed to find that physicians frequently didn’t recognize the severity of the symptoms patients themselves reported they were experiencing. And as you said, this was especially common for certain groups including patients who were younger or those who were Black or had a race other than Asian or white. And more research is really needed to understand why that's the case. 

It could be a variety of things. It could be that physicians are assuming that some groups are at higher risk and are unintentionally not applying sufficient scrutiny to detect symptoms in others. It could also be that some patients are systematically less likely to complain, either because they don’t want to trouble physicians, don’t have physician trust or time or belief that highlighting their symptoms would lead to positive interventions based on their past experiences, or for some other reasons altogether. Maybe it has to do with differences in the staffing or the characteristics of the facilities where certain patients are receiving treatment. There are really many possible explanations. 

Jamie DePolo: Okay. Now, do you think assessing side effects as less severe than they are, could this possibly be happening with other types of breast cancer treatment? I know you’re a radiation oncologist, so that is your focus, but it seems like if it’s happening here, it may be happening with other treatments? 

Dr. Reshma Jagsi: Yes. I completely agree. I do think this is much more likely than not to be a generalized issue rather than one that is limited to the detection of side effects for radiation treatment for breast cancer. I think this is much larger than that. I think it’s pointing to a deeper issue that we have in physician-patient communication and one that is essential to target to improve both the quality and the equity of care delivery, not just in radiation treatment, but across the board. 

Jamie DePolo: Okay. Now, there has been a lot of talk about disparities in breast cancer care in this past year or so. Much of it focused on diagnosis and survival, but your research seems to have found another area of disparity. So, how have your peers reacted to this research? As you said, it sounds like it’s a communication issue, so do you think doctors are going to focus on this more? 

Dr. Reshma Jagsi: Yeah. The peers with whom I’ve discussed this so far have greeted this with great conviction to try to do better going forward. I mean, keep in mind the peers that I’ve discussed this with have been part of the large statewide quality initiative that these data derive from, and everyone participating in this endeavor is deeply committed to improving the quality of care delivered to patients. 

But really, all of the physicians I know are deeply committed to improving the quality and equity of care delivered to patients. And so both the prevalence of patient-reported symptoms and the frequency with which they were underrecognized were disappointing to us, and really those with whom I’ve discussed have found the information to be valuable in having illuminated a need that we should address as the field. 

Jamie DePolo: Okay. Now, I’m wondering, too, I know, obviously, doctors are going to have to make an effort, but is this something that an institution could put policies in place to address? And I’m wondering if the University of Michigan is doing anything about this or plans to? Obviously the research results have just come out, but is that something that would be addressed at the institutional level, as well? 

Dr. Reshma Jagsi: So, what’s really neat about the Michigan Radiation Oncology Quality Consortium is that it doesn’t necessarily even require a single institution, but it’s actually a collaboration of a couple of dozen institutions. And so our institution, together with all of the other institutions in that statewide consortium from which these data were derived, can work together to follow up on these findings. 

And because physicians can’t help patients if we don’t know who’s suffering, improving symptom detection appears to be a way that we, together, can improve the quality of care and also reduce disparities in cancer treatment experiences and outcomes. The Q in MROQC, the Michigan Radiation Oncology Quality Consortium, is quality. And so it’s important that these findings are highlighting an opportunity to improve the quality of care. 

In addition, many of the members of MROQC, the Michigan Radiation Oncology Quality Consortium, are involved in clinical trials. And another implication of these findings is that those of us who are engaged in reading clinical trials within our institutions and also at the national level should not be relying on physician reports alone to evaluate the side effects of treatment. 

Patient-reported outcomes provide an important complement to physician evaluations. And so this also is something that has an implication, certainly beyond the individual physician, beyond the individual institution, even beyond our statewide consortium, but at the national level, with implications for the conduct and pursuit of clinical trials at that level as well. So, we’re really going to work together to figure out how to improve communication in this context going forward. 

Jamie DePolo: Okay. Now, you’ve talked a lot about the physician side, which is great, but I’m wondering, so if I’m a patient and I’m not sure my doctor is really recognizing my symptoms, or when I say I’m having them, maybe it just gets a note and I don’t really get any other feedback. Is there anything a patient can do to sort of make themselves better heard or improve communication on that end? 

Dr. Reshma Jagsi: Yeah. Absolutely. You know, my experience with breast cancer patients — and I have the privilege of caring for breast cancer patients as my entire clinical experience — my experience with patients with breast cancer is that they are warriors, that they will suffer in silence to take care of everyone else around them. And what I would say is, please don’t suffer in silence. Please be sure to speak up and let your physicians know if you’re experiencing symptoms like pain or itching or swelling or tiredness, or really anything else that is bothering you. 

You may know that these are expected side effects of treatment and so you may feel like it’s a hassle, but please know that you’re not bothering your physicians by telling us that you’re having symptoms. There are things that we, as physicians, can recommend to help mitigate side effects and the impact on your quality of life during treatment if we know that you’re bothered by these symptoms. 

Your physicians really want to be there to support you, and the best way for you to help them do that is to make sure you’re communicating with them. I don’t know a single physician who wouldn’t take it seriously if a patient told them she was having serious side effects. But it’s about a partnership in communication between patients and physicians, and I really do believe if we work together, we can optimize experiences and outcomes. 

Jamie DePolo: Okay. And I just have one last question. If somebody maybe isn’t comfortable talking to their doctor, for whatever reason — and I’m not saying this happens all the time, but I have had patients tell me that they didn’t feel comfortable discussing certain things with their doctor — is it possible that there is a physician assistant, a nurse, health navigator, could the patient talk to that person who could then talk to the doctor? Is that a possible way to sort of start a process if somebody feels really uncomfortable talking to their doctor? 

Dr. Reshma Jagsi: Absolutely. Cancer care delivery is a team sport, and we are critically dependent on every member of that team. And the wonderful thing about radiation oncology care, specifically, is that patients are usually coming in every day, 5 days a week, and interacting with teams of experts — therapists, nurses, and advanced practice providers — in addition to their physicians, and so there are many people out there who want to help. 

I do think that it’s important to have a good relationship with one’s clinician, and if you’re not feeling that level of trust and connection, I would encourage you to try to remedy that as best as possible also with the physician. But sometimes, as you said, absolutely, the right way is to maybe talk to someone you naturally feel more comfortable with. 

But I'd also encourage people not to jump to conclusions. I had a patient who was trying to come in for treatment for a new patient consultation on a week that I was out on vacation. And so the schedulers told me, “She really wants to be on your schedule, but you’re out on vacation.” And so I actually called the patient up, and I said, “I think you could wait and see me the week after when I’m back from vacation, but I also will tell you that the clinician who is in clinic the week that I’m on vacation is amazing, and I think you’re going to love this person.” 

She had watched a video of me online or something and decided she wanted me to be her caregiver, and I think she’d seen some demographic characteristics of this other provider and decided that maybe this person would be someone she wouldn’t be comfortable with. She said, “Oh, if I see him, do I get stuck with him or can I switch to you,” and I said, “I’ve spoken with him, and he said he’s happy to see you next week, and if you’d like to switch over to me, he’d be happy. But I’d be really surprised if you wanted to switch over to me after you have a conversation with him.” And sure enough, once she met him, she said, “You’re right. I wasn’t stuck with him at all. He’s great.” 

So, I would say, to some extent, sometimes we all have unconscious biases, we all leap to conclusions. Don’t assume that your physician won’t care if you tell him about your symptoms. Now, of course, if there’s demonstrated behavior that makes you uncomfortable, absolutely, turn to other members of the team or change your care team before your treatment starts. 

But otherwise, again, all of the physicians that I know are in this for the right reasons, and so try and build that relationship, because I think it’s so important. 

Jamie DePolo: Dr. Jagsi, thank you so much. That’s great, great advice. 

Dr. Reshma Jagsi: Thank you. I really appreciate your questions.

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