Literature DB >> 21618060

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

Kathryn B Sheets1, 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.   

Abstract

Down syndrome is one of the most common conditions encountered in the genetics clinic. Due to improvements in healthcare, educational opportunities, and community inclusion over the past 30 years, the life expectancy and quality of life for individuals with Down syndrome have significantly improved. As prenatal screening and diagnostic techniques have become more enhanced and widely available, genetic counselors can expect to frequently provide information and support following a new diagnosis of Down syndrome. This guideline was written for genetic counselors and other healthcare providers regarding the communication of a diagnosis of Down syndrome to ensure that families are consistently given up-to-date and balanced information about the condition, delivered in a supportive and respectful manner.

Mesh:

Year:  2011        PMID: 21618060     DOI: 10.1007/s10897-011-9375-8

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  35 in total

1.  Descriptive information about Down syndrome: a content analysis of serum screening leaflets.

Authors:  L D Bryant; J Murray; J M Green; J Hewison; I Sehmi; A Ellis
Journal:  Prenat Diagn       Date:  2001-12       Impact factor: 3.050

2.  [Study of somatic chromosomes from 9 mongoloid children].

Authors:  J LEJEUNE; M GAUTIER; R TURPIN
Journal:  C R Hebd Seances Acad Sci       Date:  1959-03-16

3.  A comparison of mainstream and special education for teenagers with Down syndrome: implications for parents and teachers.

Authors:  Sue Buckley; Gillian Bird; Ben Sacks; Tamsin Archer
Journal:  Downs Syndr Res Pract       Date:  2006-06

4.  ACOG Practice Bulletin No. 77: screening for fetal chromosomal abnormalities.

Authors: 
Journal:  Obstet Gynecol       Date:  2007-01       Impact factor: 7.661

Review 5.  Breaking difficult news in a newborn setting: Down syndrome as a paradigm.

Authors:  Karin M Dent; John C Carey
Journal:  Am J Med Genet C Semin Med Genet       Date:  2006-08-15       Impact factor: 3.908

6.  Prenatal diagnosis of Down syndrome: how best to deliver the news.

Authors:  Brian G Skotko; Priya S Kishnani; George T Capone
Journal:  Am J Med Genet A       Date:  2009-11       Impact factor: 2.802

Review 7.  Supporting the family of the newborn with Down syndrome.

Authors:  W C Cooley
Journal:  Compr Ther       Date:  1993

Review 8.  Postnatal diagnosis of Down syndrome: synthesis of the evidence on how best to deliver the news.

Authors:  Brian G Skotko; George T Capone; Priya S Kishnani
Journal:  Pediatrics       Date:  2009-09-28       Impact factor: 7.124

9.  Recurrence risks for trisomies 13, 18, and 21.

Authors:  Elizabeth De Souza; Jane Halliday; Annabelle Chan; Carol Bower; Joan K Morris
Journal:  Am J Med Genet A       Date:  2009-12       Impact factor: 2.802

10.  Are the cognitive functions of children with Down syndrome related to their participation?

Authors:  Tanya Rihtman; Esti Tekuzener; Shula Parush; Alex Tenenbaum; Steven J Bachrach; Asher Ornoy
Journal:  Dev Med Child Neurol       Date:  2009-09-16       Impact factor: 5.449

View more
  21 in total

1.  Effects of a genetic counseling model on mothers of children with down syndrome: a Brazilian pilot study.

Authors:  Marcos Ricardo Datti Micheletto; Nelson Iguimar Valerio; Agnes Cristina Fett-Conte
Journal:  J Genet Couns       Date:  2013-06-23       Impact factor: 2.537

2.  NICU management and outcomes of infants with trisomy 21 without major anomalies.

Authors:  Sarah McAndrew; Krishna Acharya; T Hang Nghiem-Rao; Steven Leuthner; Reese Clark; Joanne Lagatta
Journal:  J Perinatol       Date:  2018-05-25       Impact factor: 2.521

3.  Diagnosis and management of Down syndrome.

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

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.  Attitudes of mothers of children with down syndrome towards noninvasive prenatal testing.

Authors:  Gregory Kellogg; Leah Slattery; Louanne Hudgins; Kelly Ormond
Journal:  J Genet Couns       Date:  2014-02-01       Impact factor: 2.537

7.  Genetic Counseling, Professional Values, and Habitus: An Analysis of Disability Narratives in Textbooks.

Authors:  Amy R Reed
Journal:  J Med Humanit       Date:  2018-12

8.  Best ethical practices for clinicians and laboratories in the provision of noninvasive prenatal testing.

Authors:  M A Allyse; L C Sayres; M Havard; J S King; H T Greely; L Hudgins; J Taylor; M E Norton; M K Cho; D Magnus; K E Ormond
Journal:  Prenat Diagn       Date:  2013-05-21       Impact factor: 3.050

Review 9.  Understanding Effective Delivery of Patient and Family Education in Pediatric OncologyA Systematic Review From the Children's Oncology Group [Formula: see text].

Authors:  Cheryl C Rodgers; Catherine M Laing; Ruth Anne Herring; Nancy Tena; Adrianne Leonardelli; Marilyn Hockenberry; Verna Hendricks-Ferguson
Journal:  J Pediatr Oncol Nurs       Date:  2016-07-27       Impact factor: 1.636

10.  The decision to continue a pregnancy affected by Down syndrome: timing of decision and satisfaction with receiving a prenatal diagnosis.

Authors:  Emily Hurford; Anne Hawkins; Louanne Hudgins; Joanne Taylor
Journal:  J Genet Couns       Date:  2013-04-21       Impact factor: 2.537

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.