By Karuna Jaggar, Former Executive Director and SABCS Guest Writer
Multiple studies show that Black people are consistently under-medicated for pain, whether during dental work or cancer treatment. At my first ASCO Breast Cancer Symposium in San Francisco in September 2011, I was shocked by the gross speculation that physicians are more likely to suspect Black women were misusing prescribed pain medication.
At this year’s San Antonio Breast Cancer Symposium (SABCS) I was again shocked when Dr. Reshma Jagsi provided context for her important study showing that even medical trainees believe Black people have fewer nerve endings and that their skin is thicker than white skin.
It’s yet another harmful and enduring legacy of 250 years of slavery in the U.S. that results in serious health inequity, including inadequate symptom management and pain control.
Dr. Jagsi’s presentation on Thursday “Identifying patients whose symptoms are under-recognized during breast radiotherapy: comparison of patient and physician reports of toxicity in a multicenter cohort” (GS3-07) takes this issue head on. After all, if physicians don’t recognize their Black and Brown patients’ symptoms, they can’t effectively manage the side effects of treatment and provide supportive care.
Acute toxicity from radiation treatment is known to vary by race. Rather than being somehow immune to pain, there is evidence that Black, Asian and other people of color experience greater pain from radiotherapy compared to white patients. Yet other studies show that physicians systematically under-recognize their patients’ symptoms, such as gastrointestinal symptoms for patients with cervical and endometrial cancers.
Dr. Jagsi’s study collected detailed weekly surveys to learn if physicians also under-recognize breast cancer patients’ symptoms, and if this is exaggerated for BIPOC.
It’s important to understand the study design, because it speaks to the size of the chasm between what patients report and what their doctors report. Physician “under-recognition” in this study is not a slight down-grading of patient symptoms; it’s often a total failure to recognize symptoms that patients say are bothersome most or even all of the time!
This is what Dr. Jagsi and her team considered under-recognition:
- When a patient reports severe pain (scored between 7-10) but the physician rates the pain as less than or equal to 1!
- When patients rated their pain as moderate, but physicians reported no pain (score of 0)!
- When patients say they are bothered by itching and swelling (pruritis and edema) most or all of the time and physicians grade these as absent (score of 0).
- When patients say they experience significant fatigue most or all of the time, yet physicians grade the fatigue as absent (score of 0).
Let that sink in.
It’s no wonder BIPOC folx sometimes don’t tell doctors about side effects—when the data shows doctors don’t believe them anyway!
So what symptoms did the patients experience from radiation treatment for breast cancer?
- Over a third (34.5%) reported moderate to severe pain
- Nearly a third (30.6%) reported being frequently bothered by itching (pruritis)
- Almost a quarter (23.9%) reported being frequently bothered by swelling (edema)
- And a quarter (24.9%) reported severe fatigue
Clearly radiation treatment bothers a large number of patients. Yet, this is not a study of patient symptoms, but rather the study looks at the important disconnect between what patients say and what their physicians report. The researchers found that physicians missed symptoms for nearly 10,000 patients—remember, the study design considered under recognition when physicians reported no side effects even when patients are said they were quite bothered. It turns out, this is not a rare occurrence:
- Physicians failed to recognize moderate to severe pain by nearly a third (30.9%)
- Physicians under-recognized frequent itching by more than a third (36.7%)
- Physicians missed more than half (51.4%) of cases of swelling
- And physicians under-recognized nearly one in five (18.8%) cases of severe fatigue
That’s a whole lot of side effects that are not being recognized and reported by physicians.
And like most things in our healthcare system, there are significant differences between patient communities. Physicians were more likely to miss the symptoms for Black and other people of color as well as younger patients. These patients are under-treated and don’t get important symptom control when physicians systematically miss symptoms for historically marginalized and underserved patients. In addition to unnecessary suffering, including patient reported outcomes are essential for clinical trials. Knowing that physicians are missing important adverse events, clinical trials ought to include patient reported outcomes in order to improve the data quality and better understand the real trade-offs of experimental treatments.
This very important study by Dr Jagsi reveals the systematic failures of physicians to recognize quality of life symptoms in Black, Brown, and younger patients, but does not tell us why this disconnect is happening. The study did not look at the race or gender of treating physicians. And Dr. Jagsi is clear that they don’t know if patient or physician behaviors cause this serious disconnect. Other studies have found that patients are often reluctant to report side effects to physicians, for complex reasons.
Most likely, a combination of factors result in this disconnect. And undoubtedly, these factors reinforce each other: after all, if doctors systematically underestimate symptoms of Black, Indigenous and other people of color, BIPOC folx may not bother to report treatment side effects. We don’t need to resolve the chicken-or-egg question, in order to take steps to bring physician perception into closer alignment with patient reported outcomes.
So what do we do with this information? By understanding their blind spots, physicians can intentionally work to overcome them. This may mean asking better questions and listening more carefully. But it may also mean introducing additional ways of collecting the information to learn what they’re missing. When physicians explain expected symptoms to patients, they should be sure to explain they’re not saying it’s inevitable, but to encourage patients to report symptoms and seek relief. And instead of just encouraging people to “speak up” and “be your own advocate,” we need to understand the possible barriers for patients reporting symptoms, especially for BIPOC communities.