Sickle Cell Disease: Study Reveals Stigma Patterns

A study led by researchers at the University of Chicago Medicine has found that patients with sickle cell disease are more likely to have negative descriptors in their electronic health records than other patient groups. The research, published in JAMA Network Open in April 2026, suggests that clinician bias is fueled by overlapping stigmas regarding race, chronic pain, and opioid use.

Sickle cell disease is a chronic illness that disproportionately impacts Black patients, who have historically faced disparities in the quality of healthcare they receive. The researchers used natural language processing and machine learning to analyze more than 40,000 clinician notes and over 18,000 patient records to identify these patterns of bias.

Patterns of Clinician Bias

The analysis revealed that patients with sickle cell disease had higher odds of being described with negative terms in their medical records compared to patients with chronic pain and Black patients who do not have sickle cell disease.

Specific negative descriptors identified in the records included terms such as aggressive and noncompliant.

The study found that the odds of these negative descriptors were similar to those found in the records of patients with opioid use disorder. This suggests that clinician bias is strongly tied to the stigma surrounding opioid use, even though the majority of patients with sickle cell disease do not have an opioid use disorder.

To address these findings, the University of Chicago Medicine team developed an educational intervention designed to mitigate these biases and improve the quality of care for this marginalized patient population.

The Broader Impact of Stigma

The findings from the University of Chicago Medicine study align with broader research into the detrimental consequences of stigma associated with sickle cell disease. A systematic review published in Issues in Mental Health Nursing identified four primary domains through which stigma affects those living with the condition:

• The social consequences of stigma.
• The effect of stigma on psychological well-being.
• The effect of stigma on physiological well-being.
• The impact of stigma on patient-provider relationships and care-seeking behaviors.

Stigma from healthcare providers can directly impact a patient’s physical health. Some patients with sickle cell disease have reported being mistaken as drug seekers, a perception that can hinder their ability to receive necessary treatment for recurrent pain episodes.

Because sickle cell disease is strongly associated with Black race and the need for pain management, the similarity in negative descriptors between these patients and those with opioid use disorder highlights how intersectional biases contribute to healthcare disparities.

Clinical and Research Implications

The identification of these stigma patterns in electronic health records indicates that bias is not only present in interpersonal interactions but is documented within the permanent medical history of the patient. Such documentation can influence the care provided by subsequent clinicians who review the records.

The systematic review by researchers including Dominique Bulgin, Paula Tanabe, and Coretta Jenerette emphasized that current literature reveals detrimental consequences resulting from this stigma, pointing to a need for changes in both research and clinical practice.

By unpacking how stigmas around race, chronic pain, and opioid use overlap, health systems can better implement anti-bias interventions to ensure more equitable treatment for patients with sickle cell disease.