PAIN, THAT intense, unpleasant experience that is often the symptom of an underlying or potential problem, can be particularly acute for patients with sickle cell disease.
But what happens when a patient with sickle cell disease, most of whom are Black, comes to a medical provider seeking relief only to be met with skepticism, disbelief and even suspicion they are just seeking drugs?
How can patients with sickle cell disease, many of them children, and their families confront such biases? How do these biases impact their health and well-being?
And, crucially, what can be done to eliminate biases medical providers may bring with them as they treat a patient with the disease?
These are some of the hard questions being asked in a new IU School of Medicine study that aims to understand and reduce racial disparities in care of young people affected by sickle cell disease, which can impact their lifelong well-being.
Led by Amy Williams, PhD, an associate professor of clinical psychiatry at the School of Medicine, the study is one of several projects receiving start-up funding through IU’s Racial Justice Research Fund, created in 2020 to address racial equity and justice issues.
“We need to make sure that patients are being properly treated for their pain and that we are providing them the best care that we have available, and that our biases and our prejudices don’t get in the way of their treatment,” Williams said. “We also need to provide them whatever support they need to manage the illness they are dealing with—the resources to cope as much as possible.”
Working with Williams on the study are Seethal Jacob, MD, assistant professor of pediatrics at IU School of Medicine and director of the Comprehensive Pediatric Sickle Cell Program at Riley Hospital for Children, and Adam Hirsh, PhD, associate professor in the Department of Psychology at IUPUI.
Hirsh, who directs the IUPUI Pain Research Laboratory, published a study exploring racial disparities in pain care using computer simulations to untangle the psychosocial influences of pain management.
“There’s a long history of literature on racial disparities in pain care, and, historically, it is focused on Black patients with pain receiving fewer and less-potent opioids compared to white patients with pain,” Hirsh said.
This study will focus on sickle cell patients 11 to 18 years old and will examine how a patient’s perception of injustice in their care affects their symptoms and mental well-being. Williams refers to them as “injustice appraisals.”
“Over time, if you repeatedly experience biases in health care, you develop a cognitive attribution for, ‘Why is this happening to me? Is it because I’m Black, or because I have sickle cell disease, or because I’m in pain?’” Williams said.
The stakes are high.
Sickle cell disease affects about 100,000 people in the United States. It causes red blood cells to become hard and sticky, and to take on a curved, sickle-like shape. Sickle cells die early, causing a constant shortage of red blood cells. They can get stuck in blood vessels, clogging blood flow. This can lead to pain, infections, acute chest syndrome and stroke.
Children with sickle cell disease may miss school often due to pain and other symptoms which can lead to hospitalization. As they move toward adulthood, they may struggle to manage symptoms amid the demands of high school, college and careers.
“If we can intervene earlier, we can have a much more substantial impact to improve their mental health and physical health in the future,” Williams said.
A pediatric psychologist at Riley Hospital for Children at IU Health, Williams specializes in helping kids cope with chronic pain. By the time they come to her, many have lost hope that their suffering can be curbed.
When it comes to the biases in pain management, the sources of discrepancies vary. Sometimes, Williams said, it may be as blatant as a provider whose prejudices get in the way of their care. But it may simply be blind spots—much the same way women tend to get worse care for pain than men.
“In our minds, anybody who is different from us we view separately, and then we make different decisions for them than we would make for ourselves,” Williams said. “If we can see them as more similar to us, we may be able to eliminate some of those biases.”
Williams tries to help her young patients’ families cope with the negative impact of bias. She may encourage them to help a child use meditation and breathing techniques. She may help the child try to think differently about their experiences, and use behavioral strategies to help.
In terms of addressing biases in providers, Williams said it is important that physicians try to put themselves in the position of a child suffering pain. She said there are strategies, including computer-based interventions, that can help decrease biases. But the work needs to begin while doctors are being trained.
“It’s really important that going forward we do educate the med students to have this in mind—to be aware of the biases they have,” Williams said. “That’s the first step to preventing it from impacting care for their patients.”