Outpatient palliative care utilization in adults with sickle cell disease: A trinetx-based national cohort study

Abstract

Abstract Introduction: Sickle cell disease (SCD) is a chronic hematological disorder marked by complications such as recurrent vaso-occlusive crises, progressive end-organ damage, and acute chest syndrome. While outpatient palliative care (PC) has shown benefits in other serious illnesses by reducing symptom burden and improving quality of life, its role in modifying acute care utilization among adults with SCD remains poorly characterized. Despite PC's benefits, there remain barriers to its use in SCD patients. This study explores the utilization of outpatient palliative care services in SCD patients and the contribution of socioeconomic disparities affecting the outcomes. Methods: We conducted a retrospective cohort analysis using the TriNetX Research Network, a federated database comprising de-identified electronic health records from 70 healthcare organizations across the United States. Adult patients (≥18 years) with sickle cell disease (SCD) were identified between 2000 and 2023 using International Classification of Diseases, Tenth Revision (ICD-10) codes D57.0–D57.8 and Z86.2. This cohort was stratified based on outpatient palliative care (PC) utilization administered within 3 months of the first qualifying ambulatory encounter. Patients with index events more than 20 years prior to the query date were excluded. Categorical variables were compared using the chi-square test, and continuous variables were compared using Student's t-test. We evaluated the prevalence of palliative care utilization, its association with sociodemographic characteristics, and its impact on short-term acute care outcomes, specifically emergency department or inpatient encounters within 90 days post-index. Multivariable Cox proportional hazards regression was performed to assess the association between outpatient PC and acute care utilization, adjusting for age, sex, race (White or Black), chronic kidney disease, cerebral infarction, opioid use, presence of ambulatory visits, and social determinants of health, including illiteracy, unemployment, and housing/economic hardship. Results: Among 592,493 adult patients with SCD, 13,135 received outpatient PC and 574,372 did not. After exclusions, 587,507 patients were included in the final analysis. Outpatient PC was independently associated with a nearly threefold increased hazard of ED or inpatient utilization within 90 days (HR 2.91; 95% CI: 2.84–2.99; p<0.001). Other significant predictors of higher acute care use included opioid use (HR 1.91; 95% CI: 1.89–1.94), CKD (HR 1.60; 95% CI: 1.57–1.63), cerebral infarction (HR 1.44; 95% CI: 1.40–1.47), Black race (HR 1.84; 95% CI: 1.81–1.88), unemployment (HR 1.48; 95% CI: 1.37–1.59), housing/economic hardship (HR 1.76; 95% CI: 1.70–1.82), and illiteracy (HR 1.42; 95% CI: 1.14–1.77). Protective associations were observed with older age (HR 0.996; p<0.001) and the presence of ambulatory visits (HR 0.95; p<0.001). Conclusion: Our study found that adults with SCD who received outpatient palliative care were more likely to use emergency or inpatient services within 90 days. Rather than reflecting harm, this likely points to the fact that palliative care is being offered to those with the most complex and severe illness. We also found that social factors like unemployment, housing instability, and Black race were strongly linked to higher acute care use—highlighting the deep and persistent inequities faced by these communities. These findings highlight the need for a more compassionate, integrated approach to care—one that brings palliative support earlier in the course of illness and addresses the social and structural barriers that shape healthcare outcomes for people living with SCD.