Palliative Care Utilization in Sickle Cell Disease: A Nationwide Analysis of Its Trends, and Impacts
Authors: Jayakumar Jayalekshmi , Ginjupalli Manasa , Rajarajan Srinishant , Babu Kalaivani , Roy Arya Mariam 
Published: December 2024

Background:

Palliative care, once limited to end-of-life support, is now recognized for its benefits in improving quality of life and symptom control when introduced early in the disease course. While the past few decades have seen palliative care become an integral part of malignancy protocols, its adoption in sickle cell disease (SCD) remains suboptimal. Multiple prior studies have proposed models and highlighted the importance of palliative care in SCD. However, the ramifications of these proposals and the utilization of palliative care among SCD patients were never brought to the mainstream of research. This study focuses on the prevalence and trends of palliative care utilization in hospitalized SCD patients and the sociodemographic disparities affecting the same.

Methods:

We examined the National Inpatient Sample database (2016-2020) to perform a retrospective case-control analysis, using International Classification of Diseases-10th Revision codes to identify SCD hospitalizations. This cohort was stratified based on palliative care utilization. Categorical variables were compared using the chi-square test, and continuous variables were compared using the t-test. We assessed the prevalence and sociodemographic determinants contributing to the outcomes, as well as trends in palliative care utilization over the years. Multivariate regression analysis was conducted to evaluate the impact of palliative care utilization on the outcomes of SCD hospitalizations, after adjusting for socio demographics, various hospital and patient-level characteristics, and relevant confounders using the Charlson comorbidity index.

Results:

A total of 1,089,270 SCD hospitalizations were identified, of which the prevalence of palliative care utilization was 0.91% (9,935 encounters). Mean age of SCD hospitalizations who utilized palliative care was 47.87 years compared to 35.70 years for those without palliative care use. 59% of palliative care utilizers were females [p &lt;0.001]. 87.84% of palliative care encounters belonged to Black race, followed by 4.12% Hispanics and 3.56% Whites [p&lt;0.001]. Primary insurance payers for majority palliative care users were Medicare (46.3%) and Medicaid (30.83%) [p&lt;0.001]. The proportion of sickle cell hospitalizations showed a significant downtrend over the years (28% in 2016, 29% in 2017, 14% in 2018, 14% in 2019 and 13% in 2020). On the contrary, palliative care utilization among SCD showed a slight increase from 0.84% in 2016, 0.84% in 2017, 0.92% in 2018, 0.97% in 2019 to 1.16% in 2020 [OR: 1.08, 95% CI: 1.03-1.14, p: 0.02]. Univariate analysis showed a decrease in proportion of pain crisis among SCD hospitalizations who utilized palliative care over the years (46.55% in 2016, 34.85% in 2017, 36.59% in 2018, 39.64% in 2019 and 39.89% in 2020) [p: 0.07]. Multivariate regression analysis, after adjusting for confounders, revealed that SCD patients who utilized palliative care had lower odds of developing pain crises [OR: 0.78, 95% CI: 0.68-0.91, p: 0.002] compared to those who did not use palliative care. There was no statistically significant difference found between palliative care use and acute chest syndrome or multi-organ dysfunction syndrome.

Conclusion:

Our study reveals the underutilization of palliative care among SCD patients, though the trend is on a slow upward trajectory over the years. It also demonstrates the positive impact of palliative care on reducing sickle cell pain crisis, which is the most common reason for hospitalizations related to SCD. Thus, the extension of palliative care to non-malignant hematologic conditions like SCD could potentially improve healthcare resource utilization. As SCD patients often encounter both acute and chronic complications, adopting a holistic and inclusive care strategy could significantly improve biological function, overall health, and quality of life for both patients and their families.