Inpatient hospitalizations in adults with congenital heart disease and down syndrome: A national perspective

Background: Adults with Down syndrome (DS) have a greater likelihood of being diagnosed with congenital heart disease (CHD) and may face unique cardiovascular, respiratory, and immunologic health burdens during hospitalization. While CHD survival has improved in recent decades, national data on hospitalization outcomes of patients diagnosed with DS remain limited. Objectives: The present study aimed to evaluate trends in hospital admissions, inpatient management, and perioperative outcomes stratified by the presence of DS among CHD patients. Methods: This was a retrospective cohort of the 2016-2022 National Inpatient Sample. All adult (18-64 years) hospitalizations with a diagnosis of congenital heart disease, were tabulated using previously validated International Classification of Diseases diagnosis codes. Our Primary outcome of interest was in-hospital mortality. Secondary endpoints included temporal trends in admissions, utilization of various cardiac procedures, and length of stay. Results: Of an estimated 54,410 CHD patients hospitalized, 3745 (6.9%) had diagnosis of DS. During the study period, annual CHD admissions increased (nptrend<0.05), while the proportion of those with DS remained stable (6.6% to 6.2%, 2016-2022; nptrend = 0.23). Patients with DS more commonly presented as having hypothyroidism, dementia, chronic obstructive pulmonary disease (all P < 0.05) and less frequently underwent cardiac procedures (7.6 vs 23.2%, P < 0.001). Following risk-adjustment, the presence of DS remained independently associated with greater odds of mortality among all hospitalizations (AOR 2.00, 95%CI 1.40-2.88, P < 0.001). Conclusions: Adults with DS and CHD represent a clinically vulnerable population with higher in-hospital mortality and lower procedural utilization. These findings underscore the need for dedicated care pathways to improve outcomes during medical admissions.

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Publication Details

Journal
International Journal of Cardiology Congenital Heart Disease
Published
2026-04-16
DOI
https://doi.org/10.1016/j.ijcchd.2026.100674
Primary Topic
Down syndrome and intellectual disability research
Type
article
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article

Inpatient hospitalizations in adults with congenital heart disease and down syndrome: A national perspective

Esteban Aguayo, Jeffrey Balian, Daniel Tabibian, Arjun Chaturvedi et al.
International Journal of Cardiology Congenital Heart Disease
Down syndrome and intellectual disability research
article

Inpatient hospitalizations in adults with congenital heart disease and down syndrome: A national perspective

Esteban Aguayo, Jeffrey Balian, Daniel Tabibian, Arjun Chaturvedi, Oh Jin Kwon, Sona Mahrokhi, Peyman Benharash, Amulya Vadlakonda, Kevin Tabibian
article en

Abstract

Background: Adults with Down syndrome (DS) have a greater likelihood of being diagnosed with congenital heart disease (CHD) and may face unique cardiovascular, respiratory, and immunologic health burdens during hospitalization. While CHD survival has improved in recent decades, national data on hospitalization outcomes of patients diagnosed with DS remain limited. Objectives: The present study aimed to evaluate trends in hospital admissions, inpatient management, and perioperative outcomes stratified by the presence of DS among CHD patients. Methods: This was a retrospective cohort of the 2016-2022 National Inpatient Sample. All adult (18-64 years) hospitalizations with a diagnosis of congenital heart disease, were tabulated using previously validated International Classification of Diseases diagnosis codes. Our Primary outcome of interest was in-hospital mortality. Secondary endpoints included temporal trends in admissions, utilization of various cardiac procedures, and length of stay. Results: Of an estimated 54,410 CHD patients hospitalized, 3745 (6.9%) had diagnosis of DS. During the study period, annual CHD admissions increased (nptrend<0.05), while the proportion of those with DS remained stable (6.6% to 6.2%, 2016-2022; nptrend = 0.23). Patients with DS more commonly presented as having hypothyroidism, dementia, chronic obstructive pulmonary disease (all P < 0.05) and less frequently underwent cardiac procedures (7.6 vs 23.2%, P < 0.001). Following risk-adjustment, the presence of DS remained independently associated with greater odds of mortality among all hospitalizations (AOR 2.00, 95%CI 1.40-2.88, P < 0.001). Conclusions: Adults with DS and CHD represent a clinically vulnerable population with higher in-hospital mortality and lower procedural utilization. These findings underscore the need for dedicated care pathways to improve outcomes during medical admissions.

International Journal of Cardiology Congenital Heart DiseaseVol. 24
University of California, Los Angeles (US), Core Laboratories (United States) (US)
Good health and well-being
Openalex Percentile: Top 20%
Down syndrome and intellectual disability research
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