Literature DB >> 15237200

How should preconceptional cystic fibrosis carrier screening be provided? Opinions of potential providers and the target population.

Francis A M Poppelaars1, Lidewij Henneman, Herman J Adèr, Martina C Cornel, Rosella P M G Hermens, Gerrit van der Wal, Leo P ten Kate.   

Abstract

BACKGROUND: Since the identification of the cystic fibrosis (CF) gene, large-scale CF carrier screening has become possible. One possible target group is couples planning a pregnancy (preconceptional screening), providing a maximum number of reproductive options and a minimum of time constraints.
OBJECTIVES: To identify obstacles in the implementation of a preconceptional CF carrier screening programme, to find out how potential providers and the target population think the screening should be implemented, and to determine whether potential providers think they are able to provide the screening programme.
METHODS: A survey was conducted among 200 general practitioners (GPs), 134 Municipal Health Service (MHS) workers and 303 recently married couples.
RESULTS: 52% (102/197) of the eligible GPs participated, 84% (113/134) of the MHS workers and 70% (380/544) of the individuals planning a pregnancy. In general, potential providers and the target population had a positive attitude towards CF screening. Preferred methods of informing the target population were: in leaflets, during a GP consultation for those people seeking advice before pregnancy, and sending a personal invitation to all people of reproductive age. Potential providers believed that they would be able to provide the screening programme. Important perceived obstacles were the absence of a preconceptional care setting, high workload, and lack of financial resources.
CONCLUSION: Different intervention strategies will be necessary to overcome the obstacles in the implementation. The positive attitude towards CF carrier screening in combination with the willingness of the potential providers to participate in the screening programme will make it easier to overcome the obstacles. Copyright 2003 S. Karger AG, Basel

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Mesh:

Year:  2003        PMID: 15237200     DOI: 10.1159/000078163

Source DB:  PubMed          Journal:  Community Genet        ISSN: 1422-2795


  10 in total

1.  Carrier screening in preconception consultation in primary care.

Authors:  Sylvia A Metcalfe
Journal:  J Community Genet       Date:  2011-12-20

2.  "It gives them more options": preferences for preconception genetic carrier screening for fragile X syndrome in primary healthcare.

Authors:  Alison D Archibald; Chriselle L Hickerton; Samantha A Wake; Alice M Jaques; Jonathan Cohen; Sylvia A Metcalfe
Journal:  J Community Genet       Date:  2016-02-03

3.  "Suddenly Having two Positive People who are Carriers is a Whole New Thing" - Experiences of Couples Both Identified as Carriers of Cystic Fibrosis Through a Population-Based Carrier Screening Program in Australia.

Authors:  Liane Ioannou; Martin B Delatycki; John Massie; Jan Hodgson; Sharon Lewis
Journal:  J Genet Couns       Date:  2015-05-01       Impact factor: 2.537

4.  Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature.

Authors:  S Janssens; A De Paepe; P Borry
Journal:  J Community Genet       Date:  2012-12-29

5.  Determinants of the intention of preconception care use: lessons from a multi-ethnic urban population in the Netherlands.

Authors:  S Temel; E Birnie; H M Sonneveld; A J J Voorham; G J Bonsel; E A P Steegers; S Denktaş
Journal:  Int J Public Health       Date:  2012-08-08       Impact factor: 3.380

6.  Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?

Authors:  Phillis Lakeman; Anne Marie Catharina Plass; Lidewij Henneman; Pieter Dirk Bezemer; Martina Cornelia Cornel; Leo Pieter ten Kate
Journal:  Eur J Hum Genet       Date:  2009-02-18       Impact factor: 4.246

7.  Health practitioners' perceptions of the barriers and enablers to the implementation of reproductive genetic carrier screening: A systematic review.

Authors:  Stephanie Best; Janet Long; Tahlia Theodorou; Sarah Hatem; Rebecca Lake; Alison Archibald; Lucinda Freeman; Jeffrey Braithwaite
Journal:  Prenat Diagn       Date:  2021-03-05       Impact factor: 3.050

8.  Responsible implementation of expanded carrier screening.

Authors:  Lidewij Henneman; Pascal Borry; Davit Chokoshvili; Martina C Cornel; Carla G van El; Francesca Forzano; Alison Hall; Heidi C Howard; Sandra Janssens; Hülya Kayserili; Phillis Lakeman; Anneke Lucassen; Sylvia A Metcalfe; Lovro Vidmar; Guido de Wert; Wybo J Dondorp; Borut Peterlin
Journal:  Eur J Hum Genet       Date:  2016-03-16       Impact factor: 4.246

9.  Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases.

Authors:  Mirjam Plantinga; Erwin Birnie; Kristin M Abbott; Richard J Sinke; Anneke M Lucassen; Juliette Schuurmans; Seyma Kaplan; Marian A Verkerk; Adelita V Ranchor; Irene M van Langen
Journal:  Eur J Hum Genet       Date:  2016-05-11       Impact factor: 4.246

Review 10.  Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature.

Authors:  Natalie A Mikat-Stevens; Ingrid A Larson; Beth A Tarini
Journal:  Genet Med       Date:  2014-09-11       Impact factor: 8.822

  10 in total

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