Literature DB >> 23604903

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

Emily Hurford1, Anne Hawkins, Louanne Hudgins, Joanne Taylor.   

Abstract

In order to provide the best genetic counseling possible for women who learn of a diagnosis of Down syndrome prenatally, we sought to assess the timing of the decision to continue a pregnancy and the satisfaction these women had with learning this information. Fifty-six mothers of children with Down syndrome diagnosed prenatally between 2007 and 2010 completed a survey regarding their experience with decision-making after prenatal diagnosis. Approximately one third (17/56) of participants reported they knew before getting pregnant that they would not terminate for any reason, and almost half of the participants (24/56) reported they did not decide to continue their pregnancy until after the diagnosis. Many participants (82 %; 42/56) stated that learning the diagnosis during pregnancy increased their anxiety. The majority (88 %; 45/56) also reported that if they could do it over again, they would undergo prenatal testing for preparation purposes, despite increased anxiety. Religious and spiritual beliefs as well as feeling attached to the baby were the personal factors that had the greatest impact on most women's decision-making. Despite increased anxiety caused by learning the diagnosis prenatally, most women favored prenatal diagnosis as it allowed them time to process the information and prepare for the birth of their child.

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Year:  2013        PMID: 23604903     DOI: 10.1007/s10897-013-9590-6

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


  10 in total

Review 1.  Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. European Concerted Action: DADA (Decision-making After the Diagnosis of a fetal Abnormality).

Authors:  C Mansfield; S Hopfer; T M Marteau
Journal:  Prenat Diagn       Date:  1999-09       Impact factor: 3.050

2.  Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test.

Authors:  Joël Zlotogora
Journal:  Prenat Diagn       Date:  2002-12       Impact factor: 3.050

Review 3.  Prenatal diagnosis of Down syndrome: a systematic review of termination rates (1995-2011).

Authors:  Jaime L Natoli; Deborah L Ackerman; Suzanne McDermott; Janice G Edwards
Journal:  Prenat Diagn       Date:  2012-02       Impact factor: 3.050

4.  Variation in the decision to terminate pregnancy in the setting of fetal aneuploidy.

Authors:  Brian L Shaffer; Aaron B Caughey; Mary E Norton
Journal:  Prenat Diagn       Date:  2006-08       Impact factor: 3.050

5.  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

6.  Variables influencing pregnancy termination following prenatal diagnosis of fetal chromosome abnormalities.

Authors:  Anne Hawkins; Ana Stenzel; Joanne Taylor; Valerie Y Chock; Louanne Hudgins
Journal:  J Genet Couns       Date:  2012-09-23       Impact factor: 2.537

7.  Decision-making for termination of pregnancies with fetal anomalies: analysis of 53,000 pregnancies.

Authors:  Kenneth B Schechtman; Diana L Gray; Jack D Baty; Steven M Rothman
Journal:  Obstet Gynecol       Date:  2002-02       Impact factor: 7.661

8.  Women's opinions and the implications of first- versus second-trimester screening for fetal Down's syndrome.

Authors:  L H Kornman; M J Wortelboer; J R Beekhuis; L P Morssink; A Mantingh
Journal:  Prenat Diagn       Date:  1997-11       Impact factor: 3.050

9.  Prenatally diagnosed Down syndrome: mothers who continued their pregnancies evaluate their health care providers.

Authors:  Brian G Skotko
Journal:  Am J Obstet Gynecol       Date:  2005-03       Impact factor: 8.661

10.  Parental decision following prenatal diagnosis of fetal chromosome abnormality.

Authors:  M S Verp; A T Bombard; J L Simpson; S Elias
Journal:  Am J Med Genet       Date:  1988-03
  10 in total
  12 in total

1.  Investigating Pregnancy Outcomes After Abnormal Cell-Free DNA Test Results.

Authors:  Jessica Lu; Devereux N Saller; Luanne M Fraer; Beatrice A Chen
Journal:  J Genet Couns       Date:  2018-01-24       Impact factor: 2.537

2.  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

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

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

4.  A Qualitative Study of Factors Influencing Decision-Making after Prenatal Diagnosis of down Syndrome.

Authors:  Amy R Reed; Kathryn L Berrier
Journal:  J Genet Couns       Date:  2016-12-29       Impact factor: 2.537

5.  Attitudes of Filipino parents of children with Down syndrome on noninvasive prenatal testing.

Authors:  Leniza G de Castro-Hamoy; Ma-Am Joy R Tumulak; Maria Stephanie Fay S Cagayan; Peter A Sy; Nona Rachel C Mira; Mercy Y Laurino
Journal:  J Community Genet       Date:  2022-06-02

6.  Is preparation a good reason for prenatal genetic testing? Ethical and critical questions.

Authors:  Marsha Michie
Journal:  Birth Defects Res       Date:  2020-03-01       Impact factor: 2.344

7.  Knowledge and Attitudes Regarding Non-Invasive Prenatal Testing (NIPT) and Preferences for Risk Information among High School Students in Sweden.

Authors:  Susanne Georgsson; Ellika Sahlin; Moa Iwarsson; Magnus Nordenskjöld; Peter Gustavsson; Erik Iwarsson
Journal:  J Genet Couns       Date:  2016-08-02       Impact factor: 2.537

8.  Decision aids that support decisions about prenatal testing for Down syndrome: an environmental scan.

Authors:  Maria Esther Leiva Portocarrero; Mirjam M Garvelink; Maria Margarita Becerra Perez; Anik Giguère; Hubert Robitaille; Brenda J Wilson; François Rousseau; France Légaré
Journal:  BMC Med Inform Decis Mak       Date:  2015-09-24       Impact factor: 2.796

9.  Women's Experiences and Preferences for Service Delivery of Non-Invasive Prenatal Testing for Aneuploidy in a Public Health Setting: A Mixed Methods Study.

Authors:  Celine Lewis; Melissa Hill; Lyn S Chitty
Journal:  PLoS One       Date:  2016-04-05       Impact factor: 3.240

10.  Parents' perceptions of diagnostic genetic testing for children with inherited retinal disease in China.

Authors:  Yu Zhang; Zhirong Wang; Sijian Huang; Limei Sun; Shiying Zhao; Yimin Zhong; Huiming Xiao; Xiaoyan Ding
Journal:  Mol Genet Genomic Med       Date:  2019-08-01       Impact factor: 2.183

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