Negative Descriptors of Patients With Sickle Cell Disease in the Electronic Health Record

Patients with sickle cell disease (SCD) may experience clinician biases due to intersecting stigmatizing factors because most patients with SCD racially identify as Black, have pain as the most common presenting symptom, and are often treated with opioids.

To examine intersecting stigmatizing identities of patients with SCD-identifying as Black, presenting with pain, and being treated with opioids-and compare differences in negative descriptors in the electronic health record relative to SCD.

This cross-sectional, single-center study of outpatient, emergency department, and inpatient encounters examined clinician notes from January 1, 2019, to October 1, 2020. Clinician notes were included for patients who racially identified as Black or had diagnoses of SCD, chronic pain, or opioid use disorder (OUD). Notes were also included for a counterfactual group of patients who were not Black and did not have SCD, chronic pain, or OUD. Data were analyzed from November 2024 to February 2026.

Patients with SCD were compared with 4 groups, all without SCD: (1) Black patients, (2) patients with chronic pain, (3) patients with OUD, and (4) the counterfactual group.

Using natural language processing and a machine learning model, clinician notes were contextually coded for the application of 7 negative descriptors: aggressive, agitated, angry, nonadherent, noncompliant, noncooperative, and refuse.

A total of 39 871 clinician notes across 18 326 patients were analyzed (mean [SD] age, 47 [23] years); 2183 patients were pediatric (12%), 10 243 were female (56%), 11 137 were Black (63%), 5907 were married (32%), and 5884 had Medicaid (32%). Negative descriptors were present in 220 of 1443 notes (15%) among patients with SCD and 124 of 643 notes (19%) among those with all 4 stigmatizing identities. There were higher odds of a negative descriptor in notes about patients with SCD compared with Black patients without SCD (aOR, 2.46; 95% CI, 1.62-3.73), patients with chronic pain without SCD (aOR, 1.96; 95% CI, 1.18-3.27), and patients in the counterfactual group (aOR, 14.26; 95% CI, 5.92-34.36), but there was no difference compared with patients with OUD without SCD (aOR, 0.76; 95% CI, 0.42-1.38).

In this cross-sectional study of 18 326 patients, those with SCD had more negative descriptors than Black patients without SCD or those with chronic pain but at a similar level as those with OUD.