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Published online September 28, 2009
PEDIATRICS Vol. 124 No. 4 October 2009, pp. e751-e758 (doi:10.1542/peds.2009-0480)
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ARTICLE

Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News

Brian G. Skotko, MD, MPPa, George T. Capone, MDb, Priya S. Kishnani, MDc for the Down Syndrome Diagnosis Study Group

a Division of Genetics, Department of Medicine, Children's Hospital Boston, Boston, Massachusetts
b Division of Neurology and Developmental Medicine, Kennedy Krieger Institute, Department of Pediatrics, Johns Hopkins Medical Institutions, Baltimore, Maryland
c Division of Medical Genetics, Department of Pediatrics, Duke University Medical Center, Durham, North Carolina

CONTEXT: Many parents of children with Down syndrome (DS) have expressed dissatisfaction with how they learned about their child's diagnosis. DS remains the most common chromosomal condition, occurring in 1 of every 733 births, with the majority of children still diagnosed postnatally.

OBJECTIVE: Our goal was to review systematically all available evidence regarding how physicians should approach the conversation in which they explain DS for the first time to new parents.

METHODS: We searched online databases from 1960 to 2008, including Medline and PsychInfo, as well as Web sites maintained by academic organizations (eg, American Academy of Pediatrics) and other nonprofit or private organizations (eg, the National Down Syndrome Society), by using the terms "Down syndrome," "trisomy 21," "mongolism," "prenatal diagnosis," "postnatal care," and "delivery of health care." Articles were selected that answered ≥1 research question, established a priori: (1) Who is the best person to communicate the news? (2) When is the best time to share the news? (3) Where is the best place or setting to deliver the news? (4) What information should be delivered? and (5) How should the news be communicated? All studies were evaluated for quality according to the method outlined by the US Preventative Services Task Force. Final recommendations were based on the strength of evidence.

RESULTS: Parents prefer to receive the diagnosis together in a joint meeting with their obstetrician and pediatrician. The conversation should take place in a private setting as soon as a physician suspects a diagnosis of DS. Accurate and up-to-date information should be conveyed, including information about local support groups and resources.

CONCLUSION: By implementing a few cost-neutral measures, physicians can deliver a postnatal diagnosis of DS in a manner that will be deemed by new parents as sensitive and appropriate.

Key Words: postnatal diagnosis • Down syndrome • trisomy 21 • postnatal care • delivery of healthcare • disclosure

Abbreviations: ACOG—American College of Obstetrics and Gynecology • DS—Down syndrome

Accepted May 29, 2009.


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