Bias in sickle cell care may be tied to opioid stigma, new study finds
Research highlights how patients are described in medical records
Written by |
Clinician bias toward people with sickle cell disease (SCD) may be tied to stigma around opioid use, rather than race or chronic pain alone, a new study suggests.
“Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder,” Monica Peek, MD, the study’s senior author at the University of Chicago Medicine (UChicago Medicine), said in a university news story. “It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication. And yet, within health professions and society as a whole, there is a persistent bias that stereotypes these patients primarily as ‘drug-seekers’ rather than regular people managing a chronic disease.”
The study, “Negative Descriptors of Patients With Sickle Cell Disease in the Electronic Health Record,” was published in JAMA Network Open.
Abnormal blood cells in SCD can block blood flow
SCD is marked by an abnormal form of hemoglobin, the protein that red blood cells use to carry oxygen through the bloodstream. The abnormal hemoglobin causes the cells to become deformed, making them prone to getting stuck in blood vessels, which can block blood flow and lead to extremely painful episodes known as vaso-occlusive crises (VOCs).
VOCs are a common reason people with SCD seek emergency care, where pain is treated with medications. Opioids are often used because they can provide fast, effective relief.
But “because opioids are often prescribed to manage chronic pain, patients with SCD likely face bias related to opioid use even if they do not have OUD [opioid use disorder],” the researchers wrote.
OUD is a medical condition involving problematic opioid use despite harmful physical or social consequences.
People with SCD may face discrimination due to the perception of being drug-seeking, but other factors also may be at play. Notably, most people with SCD are Black, and race-based discrimination from healthcare providers is a well-documented phenomenon. Chronic diseases in general also carry associated social stigmas.
“Part of the issue for Black patients — and many marginalized groups — is that many in this population have multiple social identities that may be stigmatized because of income, immigration status, gender, or other factors. So when patients experience discrimination in healthcare, it is challenging to pinpoint what identity may be triggering the behavior,” Peek said. “Our goal was to try and isolate the effect of race, chronic illness, and opioid use in order to understand how clinicians respond to each one and what that means for the care they deliver to patients with sickle cell disease.”
Researchers analyze clinician notes for signs of bias
The researchers used natural language processing and machine learning tools to analyze nearly 40,000 clinician notes for more than 18,000 patients seen at UChicago Medicine in outpatient, emergency department, or inpatient settings. The tools identified notes that included any of seven negative descriptors of the patient, including aggressive, angry, and nonadherent.
Data showed that 15% of notes about SCD patients contained negative descriptors. This rate was highest, at 19%, among Black SCD patients with chronic pain and OUD. By contrast, negative descriptors were found in only 3% of notes about people who were not Black and did not have SCD, chronic pain, or OUD.
It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication.
Statistical analyses adjusted for patient and clinical characteristics showed that people with SCD were roughly twice as likely to have negative descriptors compared with two non-SCD groups: people who were Black and those with chronic pain.
Notes about patients with SCD were also more than 14 times as likely to contain negative descriptors than notes about people who were not Black and did not have SCD, chronic pain, or OUD.
However, negative descriptors occurred at similar rates in notes about SCD patients and non-SCD patients with opioid use disorder.
“Our findings suggest that SCD amplifies the bias patients experience beyond racial identity and chronic pain, likely due to the conflation of opioid use with OUD,” the researchers wrote.
Study highlights most common negative descriptors
The most commonly used negative descriptors in notes for SCD patients were “refuse,” “noncompliant,” and “nonadherent,” terms often used when patients do not follow or agree with clinician recommendations.
The researchers noted that patients who experience discrimination may be less likely to follow clinician recommendations, and that labeling patients as hard to work with in their records may lead to further discrimination and amplify the problem.
“Rather than propagate negative labels of patients, clinicians should understand why patients do not want to take a medication or are having trouble with adherence, and then adjust the plan to support patients and document this patient-centered care accordingly,” the researchers wrote.
Peek and colleagues have also developed an anti-bias educational intervention that has been delivered to UChicago Medicine residents and is showing early signs of effectiveness.
“This work sheds light on issues patients have been experiencing for many years, and we’re not only paying attention to it — we’re doing something about it,” said Austin Wesevich, MD, a hematologist and health services researcher at UChicago Medicine. “We need effective anti-bias interventions to improve care for patients with sickle cell disease, and this deeper understanding is a step in the right direction.”
