BOSTON September 28th, 2009 New prenatal tests for Down syndrome are soon to be offered to all pregnant women across the United States, yet telling an expectant couple that their child will be born with Down syndrome is a task very few physicians are trained for, claims research published in the American Journal of Medical Genetics. The study, which reviewed decades of surveys and interviews, offers several recommendations for how physicians can best deliver the news.
A 29-member research team, led by Dr. Brian Skotko from Children's Hospital Boston, supported by the National Down Syndrome Society and informed by experts from across the field, reviewed surveys and research ranging from 1960 to present day to consider how prepared physicians felt they are to deliver a diagnosis. They also studied the opinions of couples who had received the diagnosis to determine the best way of delivering the news.
"Down syndrome (DS) remains the most common chromosomal condition. It occurs in one out of every 733 live births," said Skotko. "Nearly every obstetrician can expect to have a conversation with expectant parents about the realities of life with DS, but very little research has been dedicated to understanding how physicians should communicate the news."
The team found that in a 2004 survey approximately 45% of obstetric fellows rated their training as "barely adequate or nonexistent"; a similar survey four years later found little change as 40% thought their training was "less than adequate." In 2005 a survey of 2,500 medical students showed that 81% believed they were "not getting any clinical training regarding individuals with intellectual disabilities."
To improve this scenario the team set out to answer five critical questions which every physician should consider before delivering a diagnosis: Who is the best person to communicate the news? When is the best time to share the news? Where should the news be delivere
|Contact: Ben Norman|