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Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors
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....
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Published in: | Journal of genetic counseling 2011-10, Vol.20 (5), p.432-441 |
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container_title | Journal of genetic counseling |
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creator | Sheets, Kathryn B. Crissman, Blythe G. Feist, Cori D. Sell, Susan L. Johnson, Lisa R. Donahue, Kelly C. Masser-Frye, Diane Brookshire, Gail S. Carre, Amanda M. LaGrave, Danielle Brasington, Campbell K. |
description | 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. |
doi_str_mv | 10.1007/s10897-011-9375-8 |
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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.</description><identifier>ISSN: 1059-7700</identifier><identifier>EISSN: 1573-3599</identifier><identifier>DOI: 10.1007/s10897-011-9375-8</identifier><identifier>PMID: 21618060</identifier><identifier>CODEN: JGCOET</identifier><language>eng</language><publisher>Boston: Springer US</publisher><subject>Antenatal ; Biomedical and Life Sciences ; Biomedicine ; Clinical Psychology ; Diagnosis ; Down syndrome ; Down Syndrome - diagnosis ; Down Syndrome - physiopathology ; Down's syndrome ; Ethics ; Genetic counseling ; Genetic Counseling - manpower ; Genetic counselling ; Gynecology ; Health care ; Human Genetics ; Humans ; Medical diagnosis ; National Society of Genetic Counselors ; Practice guidelines ; Prenatal care ; Prenatal Diagnosis ; Professional Issues ; Public Health ; Quality of Life ; Trisomy 21</subject><ispartof>Journal of genetic counseling, 2011-10, Vol.20 (5), p.432-441</ispartof><rights>National Society of Genetic Counselors, Inc. 2011</rights><rights>2011 National Society of Genetic Counselors, Inc.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c5922-a3df7c30c46be162a3706faa4e8c796352be4d7cfd2b66f4193407a687464c223</citedby><cites>FETCH-LOGICAL-c5922-a3df7c30c46be162a3706faa4e8c796352be4d7cfd2b66f4193407a687464c223</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.proquest.com/docview/884856865?pq-origsite=primo$$EHTML$$P50$$Gproquest$$H</linktohtml><link.rule.ids>314,780,784,12846,21394,21395,27924,27925,30999,31000,33611,33612,34530,34531,43733,44115</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21618060$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Sheets, Kathryn B.</creatorcontrib><creatorcontrib>Crissman, Blythe G.</creatorcontrib><creatorcontrib>Feist, Cori D.</creatorcontrib><creatorcontrib>Sell, Susan L.</creatorcontrib><creatorcontrib>Johnson, Lisa R.</creatorcontrib><creatorcontrib>Donahue, Kelly C.</creatorcontrib><creatorcontrib>Masser-Frye, Diane</creatorcontrib><creatorcontrib>Brookshire, Gail S.</creatorcontrib><creatorcontrib>Carre, Amanda M.</creatorcontrib><creatorcontrib>LaGrave, Danielle</creatorcontrib><creatorcontrib>Brasington, Campbell K.</creatorcontrib><title>Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors</title><title>Journal of genetic counseling</title><addtitle>J Genet Counsel</addtitle><addtitle>J Genet Couns</addtitle><description>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.</description><subject>Antenatal</subject><subject>Biomedical and Life Sciences</subject><subject>Biomedicine</subject><subject>Clinical Psychology</subject><subject>Diagnosis</subject><subject>Down syndrome</subject><subject>Down Syndrome - diagnosis</subject><subject>Down Syndrome - physiopathology</subject><subject>Down's syndrome</subject><subject>Ethics</subject><subject>Genetic counseling</subject><subject>Genetic Counseling - manpower</subject><subject>Genetic counselling</subject><subject>Gynecology</subject><subject>Health care</subject><subject>Human Genetics</subject><subject>Humans</subject><subject>Medical diagnosis</subject><subject>National Society of Genetic Counselors</subject><subject>Practice guidelines</subject><subject>Prenatal care</subject><subject>Prenatal Diagnosis</subject><subject>Professional Issues</subject><subject>Public Health</subject><subject>Quality of Life</subject><subject>Trisomy 21</subject><issn>1059-7700</issn><issn>1573-3599</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><sourceid>7QJ</sourceid><sourceid>ALSLI</sourceid><sourceid>HEHIP</sourceid><sourceid>M2S</sourceid><recordid>eNqFkstu1DAUhiMEoqXwAGyQxQY2geM4vrFDUxhaVTCisI48zsngKrGLnaiaJ-F1cZoWJKTSlW_f__nIPkXxnMIbCiDfJgpKyxIoLTWTvFQPikPKJSsZ1_phngPXpZQAB8WTlC4AQCtOHxcHFRVUgYDD4tcmGjs6i2Q9uRZ75zGRLkSyCsMweWfN6PyOGLKJ6M1oepLPNiGNy-LYmZ0PySUSOnIcrjw53_s2hgHfka9oswN9mxXBXxPjDySfr5c5ex6sw3E_76_RYy4iXzr5hH2I6WnxqDN9wmc341Hx_eOHb6tP5dmX9cnq_Vlpua6q0rC2k5aBrcUWqagMkyA6Y2pUVmrBeLXFupW2a6utEF1NNatBGqFkLWpbVeyoeLV4L2P4OWEam8Eli31vPIYpNZqC4FQxcS-pFK80aMYz-fq_JIUslJIBy-jLf9CLMMX8OrOvVlwoMfvoAtkYUorYNZfRDSbus6mZG6FZGqHJjdDMjdConHlxI562A7Z_Erc_nwG5AFeux_39xuZ0vaqhZvOTVUsy5ZDfYfxb8931_AZZFM7X</recordid><startdate>201110</startdate><enddate>201110</enddate><creator>Sheets, Kathryn B.</creator><creator>Crissman, Blythe G.</creator><creator>Feist, Cori D.</creator><creator>Sell, Susan L.</creator><creator>Johnson, Lisa R.</creator><creator>Donahue, Kelly C.</creator><creator>Masser-Frye, Diane</creator><creator>Brookshire, Gail S.</creator><creator>Carre, Amanda M.</creator><creator>LaGrave, Danielle</creator><creator>Brasington, Campbell K.</creator><general>Springer US</general><general>Blackwell Publishing Ltd</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8FD</scope><scope>8FE</scope><scope>8FH</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AN0</scope><scope>AZQEC</scope><scope>BBNVY</scope><scope>BENPR</scope><scope>BHPHI</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FR3</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>HCIFZ</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>LK8</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>M2S</scope><scope>M7P</scope><scope>NAPCQ</scope><scope>P64</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>RC3</scope><scope>7X8</scope></search><sort><creationdate>201110</creationdate><title>Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors</title><author>Sheets, Kathryn B. ; Crissman, Blythe G. ; Feist, Cori D. ; Sell, Susan L. ; Johnson, Lisa R. ; Donahue, Kelly C. ; Masser-Frye, Diane ; Brookshire, Gail S. ; Carre, Amanda M. ; LaGrave, Danielle ; Brasington, Campbell K.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c5922-a3df7c30c46be162a3706faa4e8c796352be4d7cfd2b66f4193407a687464c223</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2011</creationdate><topic>Antenatal</topic><topic>Biomedical and Life Sciences</topic><topic>Biomedicine</topic><topic>Clinical Psychology</topic><topic>Diagnosis</topic><topic>Down syndrome</topic><topic>Down Syndrome - diagnosis</topic><topic>Down Syndrome - physiopathology</topic><topic>Down's syndrome</topic><topic>Ethics</topic><topic>Genetic counseling</topic><topic>Genetic Counseling - manpower</topic><topic>Genetic counselling</topic><topic>Gynecology</topic><topic>Health care</topic><topic>Human Genetics</topic><topic>Humans</topic><topic>Medical diagnosis</topic><topic>National Society of Genetic Counselors</topic><topic>Practice guidelines</topic><topic>Prenatal care</topic><topic>Prenatal Diagnosis</topic><topic>Professional Issues</topic><topic>Public Health</topic><topic>Quality of Life</topic><topic>Trisomy 21</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Sheets, Kathryn B.</creatorcontrib><creatorcontrib>Crissman, Blythe G.</creatorcontrib><creatorcontrib>Feist, Cori D.</creatorcontrib><creatorcontrib>Sell, Susan L.</creatorcontrib><creatorcontrib>Johnson, Lisa R.</creatorcontrib><creatorcontrib>Donahue, Kelly C.</creatorcontrib><creatorcontrib>Masser-Frye, Diane</creatorcontrib><creatorcontrib>Brookshire, Gail S.</creatorcontrib><creatorcontrib>Carre, Amanda M.</creatorcontrib><creatorcontrib>LaGrave, Danielle</creatorcontrib><creatorcontrib>Brasington, Campbell K.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>ProQuest Nursing and Allied Health Journals</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Technology Research Database</collection><collection>ProQuest SciTech Collection</collection><collection>ProQuest Natural Science Collection</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>Social Science Premium Collection</collection><collection>British Nursing Database</collection><collection>ProQuest Central Essentials</collection><collection>Biological Science Collection</collection><collection>ProQuest Central</collection><collection>Natural Science Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Engineering Research Database</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>SciTech Premium Collection</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ProQuest Biological Science Collection</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>Psychology Database</collection><collection>Sociology Database</collection><collection>Biological Science Database</collection><collection>Nursing & Allied Health Premium</collection><collection>Biotechnology and BioEngineering Abstracts</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>Genetics Abstracts</collection><collection>MEDLINE - 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subjects | Antenatal Biomedical and Life Sciences Biomedicine Clinical Psychology Diagnosis Down syndrome Down Syndrome - diagnosis Down Syndrome - physiopathology Down's syndrome Ethics Genetic counseling Genetic Counseling - manpower Genetic counselling Gynecology Health care Human Genetics Humans Medical diagnosis National Society of Genetic Counselors Practice guidelines Prenatal care Prenatal Diagnosis Professional Issues Public Health Quality of Life Trisomy 21 |
title | Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors |
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