I wrote recently about my top takeaways from attending the virtual 2020 San Antonio Breast Cancer Symposium.
There was another study presented at SABCS that I’m covering separately here because the topic it speaks to is so important and because its findings were so startling.
The study, presented by Dr. Reshma Jagsi from the University of Michigan, compared what patients said about the side effects they were experiencing from radiation treatment with what their doctors reported.
The study and what it found
The study participants were breast cancer patients who were receiving radiation treatment after lumpectomy.
Both the patients and their physicians were asked to complete questionnaires after each treatment detailing symptoms they were experiencing. Roughly 9,900 patients participated.
Here’s what the study found:
- For those patients who reported moderate to severe pain (ranging from 4 to 10 on a 1-10 scale): their physicians, about 30% of the time, reported that the patients had experienced pain at only 1 on the scale or no pain at all.
- For patients who said they were experiencing itching of the breast often or all the time: the doctors, on about 36% of their responses, said their patients were experiencing no itching at all.
- For patients who reported they were experiencing swelling of the breast often or all the time: the physicians, on 51% of their responses, said their patients were experiencing no swelling at all.
- And for patients who reported they were experiencing significant fatigue most of the time or always: their physicians, about 19% of the time, said their patients were experiencing no fatigue at all.
In addition, the study found that this under-recognition of symptoms occurred more often in certain groups of patients, in particular those who were:
- younger (less than 50 years old) or
- “Black or other race”
Discussion and reactions
What was so striking about this study’s findings was not that there were differences in what patients and physicians reported, but the magnitude of the differences, with patients frequently reporting very significant symptoms while their doctors said these same symptoms were nonexistent or very minor.
Also demanding attention were the age- and race-based disparities in under-recognition of symptoms.
During the question and answer period, it was asked whether patients may be more comfortable reporting side effects on questionnaires, rather than “disappointing” their doctors with “complaints”.
Dr. Jagsi replied that she absolutely thinks that’s the case, saying “we need to encourage patients that, when we tell them certain side effects are expected, it doesn’t mean they shouldn’t tell us if they’re bothered by those side effects.” She stressed that doctors need to emphasize to patients that they want to know about any side effects that they’re experiencing and that there are things they can do to help support them through the experience.
Dr. Virginia Kaklamani, MD, Co-Director of SABCS 2020, was quoted in an article about the study in MedPage Today, saying “We need to do a better job, that’s really what it is. We need to conduct studies where patient-reported outcomes are being reported, and we need to listen more to our patients.”
Implications of the findings
This is not the first study that has found major differences in reporting of cancer treatment side effects between patients and their doctors. For example, Dr. Jagsi cited in her presentation a study published in 2020 on radiation techniques for cervical and endometrial cancer that had found similar discrepancies.
Under-recognition of treatment side effects impacts patients in at least two major ways. The first, of course, is ensuring they receive quality care including appropriate management of symptoms and side effects while undergoing treatment.
Directly related to that, getting a clear picture of individuals’ experiences with side effects, which can differ across populations, is an important part of addressing cancer health care disparities, a topic that I’ve written about in a recent post.
In addition, the impact on clinical trials in potentially very significant. Side effects for investigational treatments must be reported accurately so there is a clear picture of the benefits and risks of treatments being studied. Therefore, the findings also underscore the importance of collecting patient-reported outcomes in clinical trials rather than relying solely on what physicians report.
Patient advocate Martha Carlson has written an article in Cure Today with some excellent tips on talking to your doctor about cancer treatment side effects.
Another great resource on this issue is the website Breastcancer.org. Tips for Communicating With Your Doctor includes suggestions and questions to ask when talking with your doctors and nurses about pain and other side effects. Treatment Side Effects provides a helpful reference list of possible side effects of breast cancer treatment and ways to manage them.
Image Credit: National Cancer Institute via Unsplash