For Families

How to Deliver a Diagnosis of Down Syndrome

Two landmark research papers offer new advice for doctors on how to deliver a prenatal and postnatal diagnosis of Down syndrome. These papers, to be published in the prestigious journals Pediatrics and American Journal of Medical Genetics, offer timely recommendations when one considers that:

81% of medical students report that they get no training regarding individuals with intellectual disabilities

58% of medical school deans agree that this subject is not a priority

45% of obstetric fellows rated their training on how to explain Down syndrome as "barely adequate or nonexistent"

A research team of 29 experts around the country--including MDSC Board Members Dr. Brian Skotko and Dr. Jose Florez, and MDSC Honorary Board Member Dr. Allen Crocker, --reviewed research from 1960 to present day in order to offer guidelines on specific steps that physicians should use when explaining a diagnosis. Current mothers who have children with Down syndrome overwhelmingly reported that the information they received was inaccurate, incomplete, or, in the worst cases, offensive. The new recommendations offer guidance so that doctors can explain a difficult diagnosis in a sensitive manner.

In September 2009, the American Journal of Obstetrics and Gynecology published the work of Harold Kleinert's team, titled "Improving residents' understanding of issues, comfort levels, and patient needs regarding screening for and diagnosing Downsyndrome".  AJOG

In October 2009, the American Journal of Medical Genetics and Pediatrics, both published the work of researchers led by Brian Skotko, George Capone and Priya Kishnani. These papers address "how best to deliver the news" with prenatal and postnatal diagnoses of Down syndrome. AJMG Pediatrics

What can you do with this information? Encourage the healthcare providers that you know and work with to read these papers and implement the findings!

Make sure they know about the Brighter Tomorrows website, for training & resources on how to give a diagnosis on Down sydnrome,  and the physicians' guide on the  NDSC website.