Symptoms often underrecognized among patients receiving radiotherapy for breast cancer
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Symptoms such as pain, fatigue and pruritus often went underrecognized among patients with breast cancer treated with radiotherapy, according to study results presented at the virtual San Antonio Breast Cancer Symposium.
Black patients and younger patients appeared at significantly higher risk for symptom underrecognition, results showed.
“We were disappointed to find that physicians frequently didn’t recognize the severity of the symptoms patients themselves reported they were experiencing,” Reshma Jagsi, MD, DPhil, Newman family professor and deputy chair of the department of radiation oncology and director of Center for Bioethics and Social Sciences in Medicine at University of Michigan, told Healio.
“Because physicians cannot help patients if they don’t know who is suffering, improving symptom detection appears to be a way to improve the quality of care and to reduce disparities in cancer treatment experiences and outcomes,” Jagsi added. “The findings also suggest that clinical trials should not rely on physician reports alone to evaluate the side effects of treatments; patient-reported outcomes provide an important complement to physician evaluations.”
Symptom recognition often guides supportive care. Most clinical trials rely on physician assessments based on Common Toxicity Criteria for Adverse Events (CTCAE). CTCAE grades range from 0 — defined as an absent symptom — to 5, defined as death related to the symptom.
Jagsi and colleagues compared physician and patient reports of toxicity in a multicenter cohort to determine whether symptoms are underrecognized among patients who undergo breast radiotherapy.
“We have led prior research that has shown that a large proportion of patients have substantial side effects during radiation treatment for breast cancer, and this varies by age and race,” Jagsi said. “[Because] physicians cannot help patients with symptoms we don’t know they’re having, it was important to do this study to evaluate whether there were times when patients’ symptoms were not being recognized.”
The analysis included 9,868 patients with breast cancer who completed radiotherapy after lumpectomy between Jan. 1, 2012, and March 31 of this year at 29 practices that participate in the Michigan Radiation Oncology Quality Consortium.
Researchers independently collected and compared patient-reported outcome evaluations and physician CTCAE assessments for four symptoms.
They used the following methodology to assess symptoms and identify underrecognition:
- Pain — Patients used an approved modification of the Brief Pain Inventory to rate their pain in the previous 24 hours at its least, worst, average and “right now.” Researchers defined underrecognition as when patients reported severe pain (score range, 7-10) but physicians’ CTCAE grade was 1 or less, or when patients reported moderate pain (score range, 4-6) but physicians’ CTCAE grade was 0.
- Pruritis and edema — Researchers used modified scaled measures adapted from the Skindex questionnaire to measure bother from these symptoms. They defined underrecognition of these conditions when physicians graded them as absent but patients reported bother often or all of the time from itching or swelling.
- Fatigue —Researchers defined underrecognition as when patients reported having significant fatigue always or most of the time but physicians graded fatigue as absent.
Investigators assessed the frequency with which physicians underrecognized at least one of these four symptoms during patients’ treatment course. They used multivariable logistic regression to identify predictors of underrecognition and hypothesized this would occur more frequently among racial minorities.
Approximately one-third of patients reported substantial breast pain (34.5%) or frequent bother from pruritus (30.6%). About one-quarter of patients reported frequent bother from edema (23.9%) or severe fatigue (24.9%).
Jagsi and colleagues used 37,593 independent paired observations to evaluate symptom underrecognition among the 9,868 patients. The majority (95.2%) of paired observations occurred on the same date, and the remainder were performed within 3 days.
Researchers determined symptom underrecognition existed in 30.9% of patient-reported cases of moderate or severe pain, 36.7% of cases of patient-reported frequent pruritis, 51.4% of patient-reported frequent edema and 18.8% of patient-reported severe fatigue.
Results showed 5,510 patients reported at least one substantial symptom during radiotherapy, and physicians underrecognized at least one of these symptoms among more than half (53.2%) of these patients.
Jagsi and colleagues identified younger age and race as independently associated with symptom recognition.
Compared with those aged 60 to 69 years, risk for symptom underrecognition was significantly higher among those aged younger than 50 years (OR = 1.35; 95% CI, 1.15-1.58) and those aged 50 to 59 years (OR = 1.21; 95% CI, 1.06-1.39).
Compared with white patients, risk for symptom underrecognition was higher among those of Black race (OR = 1.92; 95% CI, 1.65-2.23) and those of races other than Black or Asian (OR = 1.82; 95% CI, 1.24-2.66).
The explanations for these “concerning patterns” must be evaluated in future research, Jagsi said.
“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,” Jagsi said. “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 sufficient trust or time or belief that highlighting their symptoms would lead to positive interventions, or for some other reason altogether.”
Other factors independently associated with risk for symptom underrecognition included treatment regimen (conventional fractionation vs. hypofractionation, OR = 1.15; 95% CI, 1.02-1.3), use of supraclavicular field (yes vs. no, OR = 0.8; 95% CI, 0.68-0.95) and treatment facility (academic vs. community, OR = 1.13; 95% CI, 1.01-1.27).
“Both the prevalence of patient-reported symptoms and the frequency with which they were underrecognized were disappointing to us, but the information is valuable in having illuminated a need that we should address,” Jagsi told Healio. “We need to understand more about why we’re seeing such frequent underrecognition of symptoms and why it’s more common in certain groups; that will help us to target interventions even more specifically to the underlying causes, be they differences in physician behaviors, patient behaviors other factors or some combination of all of these.”
Perspective
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Shelly Hayes, MD
These results are not surprising, as it has been shown in other studies that physicians often downplay patients’ symptoms. With modern techniques, radiation for breast cancer typically is well-tolerated, with excessive toxicity being rare. Thus, radiation oncologists have a preconceived notion of radiation being well-tolerated, and this biases their judgement of the severity of any given patient’s symptoms.
This study underscores the importance of tracking and reporting patient-reported symptoms rather than only those reported by the treating physician because the two often do not correlate. The most important thing is how the patient feels they are doing, not necessarily how their physician thinks they are doing.
The potential clinical implications of these findings are that future patients may not trust their treating physician’s assessment of the risks of radiation and may opt to forgo radiation based on the patient-reported symptom scores. The biggest unanswered question that needs to be addressed in future studies is determining whether the underestimation of side effects by physicians among young patients and non-white patients signal a deeper bias against these groups. If, in fact, it does, then how does this bias spill over into other aspects of their care, and how can we improve on this to ensure that we are delivering equitable, high-quality care for all?
Perspective
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Virginia Kaklamani, MD
This is a large study, and it is relatively surprising to me that — in 30% of cases — there was underrecognition of issues patients are reporting during radiation therapy. It also is surprising that this issue was even more pronounced among young women, as well as racial minorities. We need to do a better job. That is the bottom line. We need to conduct studies in which patient-reported outcomes are being reported, and we as physicians need to listen more to our patients.
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Jagsi R, et al. Abstract GS3-07. Presented at: San Antonio Breast Cancer Symposium (virtual meeting); Dec. 8-11, 2020.
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