Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study.

OBJECTIVE: Sickle cell disease (SCD) is a highly morbid condition notable for recurrent hospitalisations due to vaso-occlusive crises and complications of end organ damage. Little is known about the use of inpatient palliative care services in adult patients with SCD. This study aims to evaluate inpatient palliative care use during SCD-related hospitalisations overall and during terminal hospitalisations. We hypothesise that use of palliative care is low in SCD hospitalisations. DESIGN: A retrospective cross-sectional study using data from the National Inpatient Sample from 2008 to 2017 was conducted. SETTING: US hospitals from 47 states and the District of Columbia. PARTICIPANTS: Patients >18 years old hospitalised with a primary or secondary International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) or ICD-10-CM diagnosis of SCD were included. PRIMARY AND SECONDARY OUTCOME MEASURES: Palliative care service use (documented by ICD-9-CM and ICD-10-CM diagnosis codes V66.7 and Z51.5). RESULTS: 987 555 SCD-related hospitalisations were identified, of which 4442 (0.45%) received palliative care service. Palliative care service use increased at a rate of 9.2% per year (95% CI 5.6 to 12.9). NH-black and Hispanic patients were 33% and 53% less likely to have palliative care services compared with NH-white patients (OR 0.67; 95% CI 0.45 to 0.99 and OR 0.47; 95% CI 0.26 to 0.84). Female patients (OR 0.40; 95% CI 0.21 to 0.76), Medicaid use (OR 0.40; 95% CI 0.21 to 0.78), rural (OR 0.47; 95% CI 0.28 to 0.79) and urban non-teaching hospitals (OR 0.61; 95% CI 0.47 to 0.80) each had a lower likelihood of palliative care services use. CONCLUSION: Use of palliative care during SCD-related hospitalisations is increasing but remains low. Disparities associated with race and gender exist for use of palliative care services during SCD-related hospitalisation. Further studies are needed to guide evidence-based palliative care interventions for more comprehensive and equitable care of adult patients with SCD.

Hospital Use and Mortality in Transition-Aged Patients With Sickle Cell Disease.

OBJECTIVES: Childhood mortality in sickle cell disease (SCD) has decreased, but the transition period is associated with poor outcomes and higher mortality rates. We analyzed recent US hospitalizations and mortality trends in the transition-aged population and evaluated for differences between patients with and without SCD. METHODS: Nationwide Inpatient Sample database was used to analyze hospitalizations among individuals aged 16 to 24 years from 2003 to 2017. Diagnoses were coded by using International Classification of Diseases, Ninth Revision, Clinical Modification and International Classification of Diseases, 10th Revision, Clinical Modification. We performed bivariate analyses to assess associations between sociodemographic characteristics and SCD hospitalizations, joinpoint regression analysis to describe mortality rate trends in SCD hospitalizations, and adjusted survey logistic regression to assess associations between patient characteristics and in-hospital mortality among transition-aged SCD and non-SCD-related hospitalizations. RESULTS: There were 37 344 532 hospital encounters of patients aged 16 to 24 years during 2003-2017; both SCD and non-SCD hospitalizations increased with age. Female patients accounted for 78% of non-SCD and 54.9% of SCD hospitalizations. Although there was a +3.2% average annual percent change in SCD hospitalizations, total SCD in-hospital mortality rates did not have a statistically significant increase in average annual percent change over the study period. Patients with SCD aged 19 to 21 and 22 to 24 were more likely to suffer in-hospital mortality than those aged 16 to 18 (odds ratio = 2.09 and 2.71, respectively); the increased odds in mortality by age were not seen in our non-SCD population. CONCLUSIONS: Transition-aged hospitalizations increase with age, but SCD hospitalizations have disparate age-related mortality rates. Hospital-based comprehensive care models are vital to address the persistent burden of early adulthood mortality in SCD.