Bias In Sickle Cell Disease Documentation - EMJ

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Study Reveals Stigma Patterns in Sickle Cell Disease

sickle cell disease bias

BIAS in sickle cell disease documentation appears more strongly associated with opioid use than race or chronic pain, according to new cross sectional data analysing clinician language in electronic health records.

Sickle Cell Disease Bias in Clinical Documentation

Patients with sickle cell disease experience intersecting stigmas related to race, pain presentation, and opioid treatment.

This study examined how these factors influence the use of negative descriptors in clinician notes. Researchers analysed 39,871 notes from 18,326 patients across outpatient, emergency, and inpatient settings between 1 January 2019 and 1 October 2020.

The findings showed that negative descriptors were present in 15% of notes for patients with sickle cell disease. Among patients sharing all four stigmatizing factors, this proportion rose to 19%.

Compared with Black patients without sickle cell disease, those with the condition had significantly higher odds of negative descriptors: (adjusted odds ratio: 2.46; 95% CI: 1.62–3.73). Similar patterns were observed when compared with patients with chronic pain: (adjusted odds ratio: 1.96; 95% CI: 1.18–3.27).

Comparison Across Patient Groups

The study also evaluated differences across comparator groups without sickle cell disease. Patients with sickle cell disease had markedly higher odds of negative descriptors than a counterfactual group without Black race, chronic pain, or opioid use disorder: (adjusted odds ratio: 14.26; 95% CI: 5.92–34.36).

However, no significant difference was identified when comparing patients with sickle cell disease to those with opioid use disorder: (adjusted odds ratio: 0.76; 95% CI: 0.42–1.38). This finding suggests that the presence of opioid treatment may be a key driver of negative language in clinical documentation.

Implications For Clinical Practice

These data highlight the role of implicit bias in shaping clinician documentation, particularly with regard to patients receiving opioid therapy. While sickle cell disease is strongly associated with Black race and recurrent pain episodes, the similarity in negative descriptor use between these patients and those with opioid use disorder points to opioid related stigma as a critical factor.

The findings underscore the need for increased awareness and interventions targeting documentation practices. Addressing such biases may improve the quality of care and patient clinician relationships for individuals with sickle cell disease.

Reference

Wesevich A et al. Negative descriptors of patients with sickle cell disease in the electronic health record. JAMA Netw Open. 2026;9;(4):e266458.

Featured image: Fikri Haikal on Adobe Stock

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