Literature DB >> 23138342

The scope of prenatal diagnosis for women at increased risk for aneuploidies: views and preferences of professionals and potential users.

Antina de Jong1, Wybo J Dondorp, Anja Krumeich, Julie Boonekamp, Jan M M van Lith, Guido M W R de Wert.   

Abstract

The increasing number of prenatal diagnostic tests in prenatal screening strategies, raises the question what tests to offer and why. This qualitative study investigated the views and preferences of professionals and potential users regarding four diagnostic test options for women at increased risk for common aneuploidies. Seven focus group sessions were conducted in The Netherlands between October 2009 and June 2010, with various categories of participants (n = 55): professionals engaged in prenatal testing and potential users of this testing (meaning pregnant women and parents of young children). Participants were invited to mention all pros and cons and their preferences regarding four hypothetical diagnostic test options, presented on vignettes: a standard offer of rapid aneuploidy detection, karyotyping or array comparative genomic hybridization, representing a narrow, traditional and broad test, respectively, and the option of individualised choice. Then, a semi-structured group interview was conducted. The data were analysed by the constant comparative method. Participants identified similar test-specific pros and cons but showed different preferences. Users' opinion on what test to offer as a general policy differed from what they would choose themselves. All participants agreed that in theory, users should be enabled to make an informed choice about what test to apply, but they disagreed about the feasibility of this ideal. Standard narrow testing was favoured for its limiting effects on emotional and organisational burdens; individualised choice was preferred for assuring women's decisive influence. The varying opinions reflect different views on what autonomy in the prenatal screening context means, suggest that a single standard test offer is inadequate and that differentiation will be needed.

Entities:  

Year:  2012        PMID: 23138342      PMCID: PMC3537971          DOI: 10.1007/s12687-012-0126-9

Source DB:  PubMed          Journal:  J Community Genet        ISSN: 1868-310X


  38 in total

1.  Evaluation of molecular tests for prenatal diagnosis of chromosome abnormalities.

Authors:  G M Grimshaw; A Szczepura; M Hultén; F MacDonald; N C Nevin; F Sutton; S Dhanjal
Journal:  Health Technol Assess       Date:  2003       Impact factor: 4.014

2.  Prenatal testing guidelines: time for a new approach.

Authors:  Miriam Kuppermann; Mary E Norton
Journal:  Gynecol Obstet Invest       Date:  2005-02-09       Impact factor: 2.031

3.  Psychosocial correlates of pregnant women's attitudes toward prenatal maternal serum screening and invasive diagnostic testing: beyond traditional risk status.

Authors:  Mark A Lumley; Suzanne T Zamerowski; Laird Jackson; Kimberly Dukes; Lisa Sullivan
Journal:  Genet Test       Date:  2006

4.  Microarray genetic screening: a prenatal roadblock for life?

Authors:  Evelyne Shuster
Journal:  Lancet       Date:  2007-02-10       Impact factor: 79.321

5.  'At least we tried everything': about binary thinking, anticipated decision regret, and the imperative character of medical technology.

Authors:  Tjeerd Tymstra
Journal:  J Psychosom Obstet Gynaecol       Date:  2007-09       Impact factor: 2.949

Review 6.  Rigour and qualitative research.

Authors:  N Mays; C Pope
Journal:  BMJ       Date:  1995-07-08

7.  'Just a bystander'? Men's place in the process of fetal screening and diagnosis.

Authors:  Louise Locock; Jo Alexander
Journal:  Soc Sci Med       Date:  2005-09-13       Impact factor: 4.634

8.  Perceived risk of prenatal diagnostic procedure-related miscarriage and Down syndrome among pregnant women.

Authors:  Aaron B Caughey; A Eugene Washington; Miriam Kuppermann
Journal:  Am J Obstet Gynecol       Date:  2008-02-21       Impact factor: 8.661

Review 9.  An evidence-based approach to managing women's decisional conflict.

Authors:  Annette M O'Connor; Mary Jane Jacobsen; Dawn Stacey
Journal:  J Obstet Gynecol Neonatal Nurs       Date:  2002 Sep-Oct

10.  Qualitative research: thoughts on how to do it; how to judge it; when to use it.

Authors:  Nancy Press
Journal:  Genet Med       Date:  2005-03       Impact factor: 8.822

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  8 in total

1.  Offering a choice between NIPT and invasive PND in prenatal genetic counseling: the impact of clinician characteristics on patients' test uptake.

Authors:  Sanne L van der Steen; Diewertje Houtman; Iris M Bakkeren; Robert-Jan H Galjaard; Marike G Polak; Jan J Busschbach; Aad Tibben; Sam R Riedijk
Journal:  Eur J Hum Genet       Date:  2018-10-08       Impact factor: 4.246

2.  What do people want to know about NIPT? Content analysis of questions emailed to national NIPT information websites.

Authors:  Saskia Tamminga; Laura van Dussen; E J Joanne Verweij; Marjon A de Boer; Martina C Cornel; Lidewij Henneman
Journal:  Prenat Diagn       Date:  2017-02-28       Impact factor: 3.050

3.  Considering medical risk information and communicating values: A mixed-method study of women's choice in prenatal testing.

Authors:  An Chen; Henni Tenhunen; Paulus Torkki; Seppo Heinonen; Paul Lillrank; Vedran Stefanovic
Journal:  PLoS One       Date:  2017-03-29       Impact factor: 3.240

4.  Segmental Duplications as a Complement Strategy to Short Tandem Repeats in the Prenatal Diagnosis of Down Syndrome.

Authors:  Mohammad Reza Miri; Jamileh Saberzadeh; Abbas Behzad Behbahani; Mohammad Bagher Tabei; Mohsen Alipour; Majid Fardaei
Journal:  Iran J Med Sci       Date:  2019-05

Review 5.  The Psychological Challenges of Replacing Conventional Karyotyping with Genomic SNP Array Analysis in Prenatal Testing.

Authors:  Sam Riedijk; Karin E M Diderich; Sanne L van der Steen; Lutgarde C P Govaerts; Marieke Joosten; Maarten F C M Knapen; Femke A T de Vries; Diane van Opstal; Aad Tibben; Robert-Jan H Galjaard
Journal:  J Clin Med       Date:  2014-07-03       Impact factor: 4.241

6.  The Psychological Impact of Prenatal Diagnosis and Disclosure of Susceptibility Loci: First Impressions of Parents' Experiences.

Authors:  S L van der Steen; S R Riedijk; J Verhagen-Visser; L C P Govaerts; M I Srebniak; D Van Opstal; M Joosten; M F C M Knapen; A Tibben; K E M Diderich; R J H Galjaard
Journal:  J Genet Couns       Date:  2016-05-25       Impact factor: 2.537

7.  Choosing between Higher and Lower Resolution Microarrays: do Pregnant Women Have Sufficient Knowledge to Make Informed Choices Consistent with their Attitude?

Authors:  S L van der Steen; E M Bunnik; M G Polak; K E M Diderich; J Verhagen-Visser; L C P Govaerts; M Joosten; M F C M Knapen; A T J I Go; D Van Opstal; M I Srebniak; R J H Galjaard; A Tibben; S R Riedijk
Journal:  J Genet Couns       Date:  2017-07-04       Impact factor: 2.537

8.  Implementing non-invasive prenatal testing (NIPT) in the Netherlands: An interview study exploring opinions about and experiences with societal pressure, reimbursement, and an expanding scope.

Authors:  Iris M Bakkeren; Adriana Kater-Kuipers; Eline M Bunnik; Attie T J I Go; Aad Tibben; Inez D de Beaufort; Robert-Jan H Galjaard; Sam R Riedijk
Journal:  J Genet Couns       Date:  2019-11-11       Impact factor: 2.537

  8 in total

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