Care quality for patients with sickle cell disease and associations with negative descriptors in the electronic medical record

Abstract Introduction We previously demonstrated that patients with sickle cell disease (SCD) have higher odds of negative descriptors in the electronic medical record (EMR) than other stigmatized patient populations. These negative descriptors related to patient demeanor (aggressive, agitated, angry, noncooperative) or conformity (nonadherent, noncompliant, refused) and thus may reflect interactions in different aspects of clinical care. It is not known whether these negative descriptions of patients in the EMR are associated with differences in care quality. Methods This cross-sectional study evaluated associations between negative descriptors and care quality and compared hospitalized patients with and without SCD. Negative descriptors in the EMR were evaluated collectively (present or not), by type (demeanor vs conformity), and individually. Care quality was measured 3 ways: touchpoints per day, length of stay (LOS), and discharge before medically advised (BMA). Touchpoints were defined as paired entries and exits into a patient room lasting at least 3 minutes, measured by GOJO Hand-Hygiene System activity counters that timestamp any patient room entry or exit regardless of role (e.g., healthcare team, family). This was converted to a daily touchpoint rate. LOS was measured in days. BMA discharge, often referred to by the more stigmatizing term “against medical advice”, has been associated with higher odds of readmission. We used multilevel, multivariable linear and logistic regression models to evaluate associations between negative descriptors and care quality, and to compare potential differences in these associations between patients with and without SCD. Multilevel modeling accounted for hospitalizations clustered within patients. All models adjusted for sex, marital status, insurance type, comorbidities, and intensive care unit (ICU) transfer status given higher touchpoints in the ICU than on the floor. Results Of the 9,999 patients across 14,884 hospitalizations, 196 (2%) patients had SCD. Hospitalized patients with SCD had higher odds of a negative descriptor in the EMR than those without SCD (aOR 1.67, 95% CI 1.11-2.53), 1.2 fewer touchpoints per day (p=0.04), 1.4-day longer LOS (p<0.001), and higher odds of BMA discharge (aOR 2.89, 95% CI 1.45-5.73). While there was no difference in the odds of a demeanor-type negative descriptor, patients with SCD had higher odds of a conformity-type negative descriptor (aOR 2.00, 95% CI 1.30-3.07). Across all hospitalizations, having a negative descriptor in the EMR was associated with 0.9 more touchpoints per day (p=0.004), 0.4-day shorter LOS (p=0.04), and higher odds of BMA discharge (aOR 3.24, 95% CI 2.23-4.70). If the negative descriptor was regarding patient demeanor, then patients had 4.5 more touchpoints per day (p<0.001) and higher odds of BMA discharge (aOR 2.86, 95% CI 1.49-5.52). If the negative descriptor was regarding patient conformity, then they had a 0.5-day shorter LOS (p=0.02) and higher odds of BMA discharge (aOR 3.21, 95% CI 2.15-4.78). When including SCD as a covariate, each model demonstrated fewer touchpoints, longer LOS, and higher odds of BMA discharge for SCD hospitalizations, but none of the interaction terms between SCD and the negative descriptor variable were significant. When patients were described as aggressive, agitated, or noncooperative, they had 6.5, 4.8, and 3.9 more touchpoints per day, but when described as nonadherent, they had 1.3 fewer touchpoints per day. Patients described as aggressive had 2.2-day longer LOS, and those described as nonadherent had 1.0-day shorter LOS. Patients described as agitated, noncompliant, or refusing had 3.7-times, 3.0-times, and 4.2-times higher odds of BMA discharge. Conclusion Patients with SCD had more negative descriptors, fewer daily touchpoints, longer LOS, and higher odds of BMA discharge than patients without SCD, indicating lower care quality. Negative descriptions of patient demeanor were associated with over 4 additional touchpoints per day, which may reflect increased bedside interactions driven by rising tensions between patients and the healthcare team. Conversely, patients described as nonadherent had fewer touchpoints per day and shorter LOS, suggesting disengagement when patients do not conform to the team's recommendations. Since patients with SCD had higher odds of a conformity negative descriptor, associated staff disengagement might contribute to longer LOS and more BMA discharges.