Down Syndrome: Evaluating Disparities in Place of Death in the United States Using Centers for Disease Control and...

The Uniform Determination of Death Act (UDDA) ensures that individuals with irreversible cessation of circulatory, respiratory, or brain functions receive timely palliative care. Our research has focused on identifying disparities in mortality among individuals with Down syndrome (DS) based on gender, age, racial groups, and geographic regions within the United States over 22 years. This study aims to analyze differences in the location of death, including hospitals, nursing homes, hospice care facilities, and unspecified locations, considering demographic and regional variables.

Utilizing a cross-sectional observational study design, we extracted data from the Centers for Disease Control and Prevention's Wide-ranging Online Data for Epidemiologic Research (CDC-WONDER) database, specifically targeting deaths coded under the International Classification of Diseases, 11th Revision (ICD-11) code "Q-90." This analysis, covering 1999 to 2020, segmented the data by age, gender, race, and United States Census regions. Death locations were categorized into home/hospice, medical facilities, and nursing/other facilities. Data analysis was conducted using Microsoft Excel, and the Autoregressive Integrated Moving Average (ARIMA) model was applied for statistical assessments.

Our analysis included 22604 deaths related to DS, as recorded in the CDC-WONDER database from 1999 to 2020. The majority of these deaths occurred in medical or nursing facilities, with home or hospice deaths accounting for 6106 cases and other locations for 5.29% of deaths. Univariate logistic regression was used to identify predictors of home or hospice deaths, revealing a trend of increasing deaths in these settings over time.

Between 1999 and 2020, there was a notable increase in the number of individuals with DS dying at home or in hospice care, especially among those aged 55-64. Female individuals and those identified as white experienced higher mortality rates than other demographic groups. This shift highlights the need to understand the disparity in places of death within this population, ensuring equitable access to quality end-of-life care for all individuals with DS.