Literature DB >> 19786436

Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news.

Brian G Skotko1, George T Capone, Priya S Kishnani.   

Abstract

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 > or =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.

Entities:  

Mesh:

Year:  2009        PMID: 19786436     DOI: 10.1542/peds.2009-0480

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  20 in total

1.  Breaking difficult news in a cross-cultural setting: a qualitative study about Latina mothers of children with down syndrome.

Authors:  Kayla M Sheets; Bonnie J Baty; Juan Carlos Vázquez; John C Carey; Wendy L Hobson
Journal:  J Genet Couns       Date:  2011-12-07       Impact factor: 2.537

2.  Diagnosis and management of Down syndrome.

Authors:  Neerja Agarwal Gupta; Madhulika Kabra
Journal:  Indian J Pediatr       Date:  2013-10-15       Impact factor: 1.967

3.  Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: recommendations of the national society of genetic counselors.

Authors:  Kathryn B Sheets; Blythe G Crissman; Cori D Feist; Susan L Sell; Lisa R Johnson; Kelly C Donahue; Diane Masser-Frye; Gail S Brookshire; Amanda M Carre; Danielle Lagrave; Campbell K Brasington
Journal:  J Genet Couns       Date:  2011-05-27       Impact factor: 2.537

Review 4.  Prenatal testing for intellectual disability: misperceptions and reality with lessons from Down syndrome.

Authors:  Kruti Acharya
Journal:  Dev Disabil Res Rev       Date:  2011

5.  What is a "balanced" description? Insight from parents of individuals with down syndrome.

Authors:  Catriona Hippman; Angela Inglis; Jehannine Austin
Journal:  J Genet Couns       Date:  2011-12-20       Impact factor: 2.537

6.  "Your baby has Down syndrome": what is the preferable way to inform parents?

Authors:  Michael S Schimmel; Francis B Mimouni; Tali Mor Yosef; Netanel Wasserteil
Journal:  J Perinatol       Date:  2020-06-02       Impact factor: 2.521

7.  Having a son or daughter with Down syndrome: perspectives from mothers and fathers.

Authors:  Brian G Skotko; Susan P Levine; Richard Goldstein
Journal:  Am J Med Genet A       Date:  2011-09-13       Impact factor: 2.802

8.  Having a brother or sister with Down syndrome: perspectives from siblings.

Authors:  Brian G Skotko; Susan P Levine; Richard Goldstein
Journal:  Am J Med Genet A       Date:  2011-09-09       Impact factor: 2.802

9.  Self-perceptions from people with Down syndrome.

Authors:  Brian G Skotko; Susan P Levine; Richard Goldstein
Journal:  Am J Med Genet A       Date:  2011-09-09       Impact factor: 2.802

10.  Genetic counseling in a busy pediatric metabolic practice.

Authors:  Jessica N Hartley; Cheryl R Greenberg; Aizeddin A Mhanni
Journal:  J Genet Couns       Date:  2010-09-14       Impact factor: 2.537

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