Doctors More Likely to Use Negative Terms for Sickle Cell Patients
/By Crystal Lindell
Sickle cell patients are more likely than other patients to have negative descriptions in their medical charts, such as “noncompliant” and “noncooperative,” according to a new study published in JAMA Network Open.
The results are concerning because prior research has shown that such descriptors make doctors less likely to aggressively treat pain, a common symptom of sickle cell disease. The genetic disorder causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels. About 100,000 Americans have sickle cell disease, primarily people of African or Hispanic descent.
Researchers at the University of Chicago used artificial intelligence to analyze electronic health records and clinician notes for over 18,000 adult patients. They looked for seven negative words in patient charts: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.
The descriptive words for sickle cell patients were then compared to those of four other groups without sickle cell disease: Black patients; patients diagnosed with chronic pain, patients diagnosed with opioid use disorder (OUD), and non-Black patients.
They found that patients with sickle cell disease had higher odds of having negative descriptions than Black patients, non-Black patients and patients with chronic pain, but had similar odds of negative descriptors as patients with opioid use disorder. Non-Black patients had the fewest negative descriptors than the other patient groups.
Black patients with sickle cell disease, chronic pain, and OUD had the highest frequency (19%) of negative descriptors in their medical notes.
The researchers said their findings suggest there is bias against patients with sickle cell disease, particularly when opioids are involved.
“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,” said senior author Monica Peek, MD, a Professor for Health Justice at University of Chicago Medicine.
“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 bias and stigma have real life consequences: If a doctor or nurse sees negative descriptors in a patient’s chart, they are less likely to effectively treat their pain.
When it comes to terms like “noncompliant,” the issue can be a bit of a chicken-egg situation — it’s difficult to know what came first.
Prior research has shown that patients with sickle cell disease who experience discrimination in health care are less likely to follow physician recommendations. These same patients may then be labeled as “noncompliant,” which could perpetuate discriminatory behavior against them.
The researchers said that clinicians should work to understand why a patient may not want to take a medication or has trouble adhering to treatment, and then adjust their treatment plan to support the patients from there. And they should avoid using negative terms in patient charts.
