Research Spotlight: How Often Were Adults With Down Syndrome Listed as Do-Not-Resuscitate During the COVID-19 Era?

Stephanie Santoro, MD, Director of Quality Improvement Research for the Down Syndrome Program at Mass General for Children, is senior author of a recent study in the American Journal of Medical Genetics, Part C, Retrospective Review of Code Status of Individuals with Down Syndrome During the COVID-19 Era.

What Question Were You Investigating with this Study?

How often are adults with Down syndrome (DS) listed as Do-Not-Resuscitate (DNR) during the COVID-19 era?

What Methods or Approach Did You Use?

Retrospective claims data from the Vizient® Clinical Data Base (used with permission of Vizient, all rights reserved.) of inpatient encounters with pneumonia (PNA) and/or COVID-19 at 825 hospitals from January 2019 to June 2022 were included.

Claims data was analyzed for risk of mortality and risk of "Do Not Resuscitate" (DNR) status upon admission, considering patient age, admission source, Elixhauser comorbidities (excluding behavioral health) and DS. Logistic regression models with backward selection were created.

What Were the Results?

In total, 1,739,549 inpatient encounters with diagnoses of COVID-19, PNA, or both were included. After controlling for other risk factors, a person with a diagnosis of Down syndrome and a diagnosis of COVID-19 pneumonia had six times the odds of having a DNR status ordered at admission to the hospital compared with those with COVID-19 pneumonia without DS.

The diagnosis of DS had the strongest association with DNR status after controlling for other risk factors.

What Are the Next Steps?

We hope that open and honest discussions among healthcare professionals can foster equitable approaches to end-of-life care and code status.

Paper Cited:

Jett, J., Fossi, A., Blonsky, H., Ross, W., Townsend, S., Stephens, M. M., Chicoine, B., & Santoro, S. L. (2024). Retrospective review of the code status of individuals with Down syndrome during the COVID-19 era. American journal of medical genetics. Part C, Seminars in medical genetics, 196(1), e32080.

About the Massachusetts General Hospital

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In July 2022, Mass General was named #8 in the U.S. News & World Report list of "America’s Best Hospitals." MGH is a founding member of the Mass General Brigham healthcare system.