Research Spotlight: Timing of Referrals to a Down Syndrome Parent Group By Race

Stephanie Santoro, MD, Director of Quality Improvement Research for the Down Syndrome Program at Mass General for Children and an assistant professor of Pediatrics at Harvard Medical School, is senior author of a recent study in the journal Pediatric Quality & Safety, Timing of Referrals to a Down Syndrome Parent Group by Race.

What Question Were You Investigating?

The Down Syndrome Association of Central Ohio (DSACO) is a nonprofit organization that supports families, promotes community involvement, and encourages lifetime opportunities for people with Down syndrome.

This study aimed to evaluate the frequency of early and late referrals and trial solutions. We hypothesized that not all families were referred to DSACO within 48 hours and that a difference in referral timing between minority and White families could exist. Studying the referral process would identify opportunities for DSACO to connect, educate and support families sooner.

What Approach Did You Use?

At DSACO, ongoing efforts for quality improvement included:

• The formation of Medical Advisory Committee in 2016
• The creation of resource groups for Latino families in 2017, for Somali families from 2018 to 2019, and for African American families in fall 2018, presentations at birth hospitals
• Close tracking of referrals from hospitals when an infant with Down syndrome is born

In addition, the timing of referrals, either "early" (on the day of birth or the first day after birth) or "late" (two or more days after birth), were tracked and plotted in p charts.

What Were Your Findings?

From January 2017 to April 2021, DSACO received 167 referrals; of these, a median of 65% was received "early." When analyzing all referrals to DSACO, no special cause was seen over the time studied.

When evaluating the timing of referral to DSACO by race, referrals for 78% of White families were early (105/135 referrals).

In comparison, referrals for 9% of minority families were early (3/32 referrals).

The timing of DSACO referral differed by race. Outreach efforts did not change referral timing but led to a more diverse DSACO membership.

What’s Next?

Future study is needed to confirm if there is racial disparity in the timing of referrals to resources nationally and to understand the barriers in referring diverse families to Down syndrome nonprofit organizations.

Paper Cited:

Ansong, E. O., Jones, K., & Santoro, S. L. (2023). Timing of Referrals to a Down Syndrome Parent Group by Race. Pediatric quality & safety, 8(1), e632. https://doi.org/10.1097/pq9.0000000000000632

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.