Skip to main content
Top
Published in: BMC Health Services Research 1/2014

Open Access 01-12-2014 | Research article

Explaining variation in Down’s syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews

Published in: BMC Health Services Research | Issue 1/2014

Login to get access

Abstract

Background

The offer of prenatal Down’s syndrome screening is part of routine antenatal care in most of Europe; however screening uptake varies significantly across countries. Although a decision to accept or reject screening is a personal choice, it is unlikely that the widely differing uptake rates across countries can be explained by variation in individual values alone.
The aim of this study was to compare Down’s syndrome screening policies and programmes in the Netherlands, where uptake is relatively low (<30%) with England and Denmark where uptake is higher (74 and > 90% respectively), in an attempt to explain the observed variation in national uptake rates.

Methods

We used a mixed methods approach with an embedded design: a) documentary analysis and b) expert stakeholder analysis. National central statistical offices and legal documents were studied first to gain insight in demographic characteristics, cultural background, organization and structure of healthcare followed by documentary analysis of primary and secondary sources on relevant documents on DSS policies and programme. To enhance interpretation of these findings we performed in-depth interviews with relevant expert stakeholders.

Results

There were many similarities in the demographics, healthcare systems, government abortion legislation and Down’s syndrome screening policy across the studied countries. However, the additional cost for Down’s syndrome screening over and above standard antenatal care in the Netherlands and an emphasis on the ‘right not to know’ about screening in this country were identified as potential explanations for the ‘low’ uptake rates of Down’s syndrome screening in the Netherlands. The social context and positive framing of the offer at the service delivery level may play a role in the relatively high uptake rates in Denmark.

Conclusions

This paper makes an important contribution to understanding how macro-level demographic, social and healthcare delivery factors may have an impact on national uptake rates for Down’s syndrome screening. It has suggested a number of policy level and system characteristics that may go some way to explaining the relatively low uptake rates of Down’s syndrome screening in the Netherlands when compared to England and Denmark.
Appendix
Available only for authorised users
Literature
1.
go back to reference Wald NJ, Kennard A, Hackshaw A, McGuire A: Antenatal screening for Down’s syndrome. J Med Screen. 1997, 4 (4): 181-246.PubMed Wald NJ, Kennard A, Hackshaw A, McGuire A: Antenatal screening for Down’s syndrome. J Med Screen. 1997, 4 (4): 181-246.PubMed
2.
go back to reference Roelofsen EE, Kamerbeek LI, Tymstra TJ, Beekhuis JR, Mantingh A: Women’s opinions on the offer and use of maternal serum screening. Prenat Diagn. 1993, 13 (8): 741-747. 10.1002/pd.1970130808.CrossRefPubMed Roelofsen EE, Kamerbeek LI, Tymstra TJ, Beekhuis JR, Mantingh A: Women’s opinions on the offer and use of maternal serum screening. Prenat Diagn. 1993, 13 (8): 741-747. 10.1002/pd.1970130808.CrossRefPubMed
3.
go back to reference Boyd PA, Devigan C, Khoshnood B, Loane M, Garne E, Dolk H, and the EOROCAT working group: Survey of prenatal screening policies in Europe for structural malformations and chromosome anomalies, and their impact on detection and termination rates for neural tube defects and Down’s syndrome. BJOG. 2008, 115 (6): 689-696. 10.1111/j.1471-0528.2008.01700.x.CrossRefPubMedPubMedCentral Boyd PA, Devigan C, Khoshnood B, Loane M, Garne E, Dolk H, and the EOROCAT working group: Survey of prenatal screening policies in Europe for structural malformations and chromosome anomalies, and their impact on detection and termination rates for neural tube defects and Down’s syndrome. BJOG. 2008, 115 (6): 689-696. 10.1111/j.1471-0528.2008.01700.x.CrossRefPubMedPubMedCentral
4.
go back to reference Loane M, Morris JK, Addor MC, Arriola L, Budd J, Doray B, Garne E, Gatt M, Haeusler M, Khoshnood B, Klungsøyr Melve K, Latos-Bielenska A, McDonnell B, Mullaney C, O’Mahony M, Queißer-Wahrendorf A, Rankin J, Rissmann A, Rounding C, Salvador J, Tucker D, Wellesley D, Yevtushok L, Dolk H: Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening. Eur J Hum Genet. 2013, 21 (1): 27-33. 10.1038/ejhg.2012.94.CrossRefPubMed Loane M, Morris JK, Addor MC, Arriola L, Budd J, Doray B, Garne E, Gatt M, Haeusler M, Khoshnood B, Klungsøyr Melve K, Latos-Bielenska A, McDonnell B, Mullaney C, O’Mahony M, Queißer-Wahrendorf A, Rankin J, Rissmann A, Rounding C, Salvador J, Tucker D, Wellesley D, Yevtushok L, Dolk H: Twenty-year trends in the prevalence of Down syndrome and other trisomies in Europe: impact of maternal age and prenatal screening. Eur J Hum Genet. 2013, 21 (1): 27-33. 10.1038/ejhg.2012.94.CrossRefPubMed
5.
go back to reference Ekelund CK, Andersen HJ, Christensen J, Ersbak V, Farlie R, Henriques C, Holmskov A, Jensen LN, Jørgensen FS, Hessellund A, Larsen T, Olesen AW, Pedersen OB, Poulsen H, Ramb J, Skibsted L, Skovbo P, Sommer S, Sperling L, Sundberg K, Juul SV, Zingenberg H, Tabor A: Down’s syndrome risk assessment in Denmark--secondary publication. Ugeskr Laeger. 2010, 172 (23): 1759-1761.PubMed Ekelund CK, Andersen HJ, Christensen J, Ersbak V, Farlie R, Henriques C, Holmskov A, Jensen LN, Jørgensen FS, Hessellund A, Larsen T, Olesen AW, Pedersen OB, Poulsen H, Ramb J, Skibsted L, Skovbo P, Sommer S, Sperling L, Sundberg K, Juul SV, Zingenberg H, Tabor A: Down’s syndrome risk assessment in Denmark--secondary publication. Ugeskr Laeger. 2010, 172 (23): 1759-1761.PubMed
6.
go back to reference Ekelund CK, Jorgensen FS, Petersen OB, Sundberg K, Tabor A, Danish Fetal Medicine Research Group: Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study. BMJ. 2008, 27: 337:a2547. Ekelund CK, Jorgensen FS, Petersen OB, Sundberg K, Tabor A, Danish Fetal Medicine Research Group: Impact of a new national screening policy for Down’s syndrome in Denmark: population based cohort study. BMJ. 2008, 27: 337:a2547.
7.
go back to reference Ekelund CK, Petersen OB, Skibsted L, Kjaergaard S, Vogel I, Tabor A: Danish Fetal Medicine Research Group: First-trimester screening for trisomy 21 in Denmark: implications for detection and birth rates of trisomy 18 and trisomy 13. Ultrasound Obstet Gynecol. 2011, 38 (2): 140-144. 10.1002/uog.8929.CrossRefPubMed Ekelund CK, Petersen OB, Skibsted L, Kjaergaard S, Vogel I, Tabor A: Danish Fetal Medicine Research Group: First-trimester screening for trisomy 21 in Denmark: implications for detection and birth rates of trisomy 18 and trisomy 13. Ultrasound Obstet Gynecol. 2011, 38 (2): 140-144. 10.1002/uog.8929.CrossRefPubMed
8.
go back to reference Siljee JE, Schielen PCJI: Kwaliteitscontrole Parameters van de Nederlandse Down Syndroom Screening Laboratoria 2011. 2012, I/230083/11/LR (Dutch only) Siljee JE, Schielen PCJI: Kwaliteitscontrole Parameters van de Nederlandse Down Syndroom Screening Laboratoria 2011. 2012, I/230083/11/LR (Dutch only)
9.
go back to reference NHS Fetal Anomaly Screening Programme: NHS fetal anomaly screening programme. Annual Report 2011–2012. 2012, 2011: 12. NHS Fetal Anomaly Screening Programme: NHS fetal anomaly screening programme. Annual Report 2011–2012. 2012, 2011: 12.
10.
go back to reference Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS: Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess. 2004, 8 (33): 1-109. iii, ix-xCrossRef Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS: Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess. 2004, 8 (33): 1-109. iii, ix-xCrossRef
11.
go back to reference Dormandy E, Michie S, Hooper R, Marteau TM: Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women’s attitudes or a failure to facilitate informed choices?. Int J Epidemiol. 2005, 34 (2): 346-352. 10.1093/ije/dyi021.CrossRefPubMed Dormandy E, Michie S, Hooper R, Marteau TM: Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women’s attitudes or a failure to facilitate informed choices?. Int J Epidemiol. 2005, 34 (2): 346-352. 10.1093/ije/dyi021.CrossRefPubMed
12.
go back to reference Yu J: A systematic review of issues around antenatal screening and prenatal diagnostic testing for genetic disorders: women of Asian origin in western countries. Health Soc Care Community. 2012, 20 (4): 329-346. 10.1111/j.1365-2524.2011.01036.x.CrossRefPubMed Yu J: A systematic review of issues around antenatal screening and prenatal diagnostic testing for genetic disorders: women of Asian origin in western countries. Health Soc Care Community. 2012, 20 (4): 329-346. 10.1111/j.1365-2524.2011.01036.x.CrossRefPubMed
13.
go back to reference Fransen MP, Wildschut HI, Vogel I, Mackenbach JP, Steegers EA, Essink-Bot ML: Ethnic differences in considerations whether or not to participate in prenatal screening for Down syndrome. Prenat Diagn. 2009, 29 (13): 1262-1269. 10.1002/pd.2391.CrossRefPubMed Fransen MP, Wildschut HI, Vogel I, Mackenbach JP, Steegers EA, Essink-Bot ML: Ethnic differences in considerations whether or not to participate in prenatal screening for Down syndrome. Prenat Diagn. 2009, 29 (13): 1262-1269. 10.1002/pd.2391.CrossRefPubMed
14.
go back to reference van den Berg M, Timmermans DR, Kleinveld JH, Garcia E, van Vugt JM, van der Wal G: Accepting or declining the offer of prenatal screening for congenital defects: test uptake and women’s reasons. Prenat Diagn. 2005, 25 (1): 84-90. 10.1002/pd.1090.CrossRefPubMed van den Berg M, Timmermans DR, Kleinveld JH, Garcia E, van Vugt JM, van der Wal G: Accepting or declining the offer of prenatal screening for congenital defects: test uptake and women’s reasons. Prenat Diagn. 2005, 25 (1): 84-90. 10.1002/pd.1090.CrossRefPubMed
15.
go back to reference Fransen MP, Essink-Bot ML, Oenema A, Mackenbach JP, Steegers EA, Wildschut HI: Ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome: a theoretical framework. Prenat Diagn. 2007, 27 (10): 938-950. 10.1002/pd.1805.CrossRefPubMed Fransen MP, Essink-Bot ML, Oenema A, Mackenbach JP, Steegers EA, Wildschut HI: Ethnic differences in determinants of participation and non-participation in prenatal screening for Down syndrome: a theoretical framework. Prenat Diagn. 2007, 27 (10): 938-950. 10.1002/pd.1805.CrossRefPubMed
16.
go back to reference Dormandy E, Marteau TM: Uptake of a prenatal screening test: the role of healthcare professionals’ attitudes towards the test. Prenat Diagn. 2004, 24 (11): 864-868. 10.1002/pd.1028.CrossRefPubMed Dormandy E, Marteau TM: Uptake of a prenatal screening test: the role of healthcare professionals’ attitudes towards the test. Prenat Diagn. 2004, 24 (11): 864-868. 10.1002/pd.1028.CrossRefPubMed
17.
go back to reference Creswell JW, Plano Clark VL: Designing and Conducting Mixed Methods Research. 2011, United States of America: SAGE publishers, 2 Creswell JW, Plano Clark VL: Designing and Conducting Mixed Methods Research. 2011, United States of America: SAGE publishers, 2
18.
go back to reference Kroneman MW, van der Zee J: Health policy as a fuzzy concept: methodological problems encountered when evaluating health policy reforms in an international perspective. Health Policy. 1997, 40 (2): 139-155. 10.1016/S0168-8510(96)00890-1.CrossRefPubMed Kroneman MW, van der Zee J: Health policy as a fuzzy concept: methodological problems encountered when evaluating health policy reforms in an international perspective. Health Policy. 1997, 40 (2): 139-155. 10.1016/S0168-8510(96)00890-1.CrossRefPubMed
19.
go back to reference Baarda DB, de Goede MPM, van der Meer-Middelburg AGE: Basisboek Open Interviewen. Praktische Handleiding Voor het Voorbereiden en Afnemen van Open Interviews. First ed. 1996, Groningen: Stenfert Kroese, Dutch only Baarda DB, de Goede MPM, van der Meer-Middelburg AGE: Basisboek Open Interviewen. Praktische Handleiding Voor het Voorbereiden en Afnemen van Open Interviews. First ed. 1996, Groningen: Stenfert Kroese, Dutch only
20.
go back to reference Bailey KD: Methods of Social Research. 2007, New York: Free Press, 4 Bailey KD: Methods of Social Research. 2007, New York: Free Press, 4
21.
go back to reference Ministry of Dutch Civil Code Book 7: Article 449. Medical Treatment Agreements Act. Dutch Translation: Burgerlijk Wetboek 7: Artikel 449. Wet op de Geneeskundige Behandelingsovereenkomst (WGBO). Ministry of Dutch Civil Code Book 7: Article 449. Medical Treatment Agreements Act. Dutch Translation: Burgerlijk Wetboek 7: Artikel 449. Wet op de Geneeskundige Behandelingsovereenkomst (WGBO).
22.
go back to reference Health Council of the Netherlands: Prenatal Screening: Down’s Syndrome, Neural Tube Defects, Routine-Ultrasonography. Dutch Translation: Prenatale Screening op Downsyndroom, Neuralebuisdefecten, Routine-Echoscopie. 2001, 2001/11 Health Council of the Netherlands: Prenatal Screening: Down’s Syndrome, Neural Tube Defects, Routine-Ultrasonography. Dutch Translation: Prenatale Screening op Downsyndroom, Neuralebuisdefecten, Routine-Echoscopie. 2001, 2001/11
23.
go back to reference Health Council of the Netherlands: Population Screening Act: Prenatal Screening: Down’s Syndrome and Neural Tube Defects. Dutch Translation: Wet Bevolkingsonderzoek: Prenatale Screening op Downsyndroom en Neuralebuisdefecten. 2007, 2007/05WBO Health Council of the Netherlands: Population Screening Act: Prenatal Screening: Down’s Syndrome and Neural Tube Defects. Dutch Translation: Wet Bevolkingsonderzoek: Prenatale Screening op Downsyndroom en Neuralebuisdefecten. 2007, 2007/05WBO
24.
go back to reference Miller FA, Alvarado K: Incorporating documents into qualitative nursing research. J Nurs Scholarsh. 2005, 37 (4): 348-353. 10.1111/j.1547-5069.2005.00060.x.CrossRefPubMed Miller FA, Alvarado K: Incorporating documents into qualitative nursing research. J Nurs Scholarsh. 2005, 37 (4): 348-353. 10.1111/j.1547-5069.2005.00060.x.CrossRefPubMed
25.
go back to reference Scott J: A Matter of Record: Documentary Sources in Social Research. 1990, Cambridge, England: Polity Press Scott J: A Matter of Record: Documentary Sources in Social Research. 1990, Cambridge, England: Polity Press
26.
go back to reference Morgan D: Snowball sampling. The SAGE encyclopedia of qualitative research methods. 2008, Thousand Oaks, CA: SAGE publications, 816-817. 1 Morgan D: Snowball sampling. The SAGE encyclopedia of qualitative research methods. 2008, Thousand Oaks, CA: SAGE publications, 816-817. 1
27.
go back to reference Finlay L: “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002, 12 (4): 531-545. 10.1177/104973202129120052.CrossRefPubMed Finlay L: “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002, 12 (4): 531-545. 10.1177/104973202129120052.CrossRefPubMed
28.
go back to reference Hsieh HF, Shannon SE: Three approaches to qualitative content analysis. Qual Health Res. 2005, 15 (9): 1277-1288. 10.1177/1049732305276687.CrossRefPubMed Hsieh HF, Shannon SE: Three approaches to qualitative content analysis. Qual Health Res. 2005, 15 (9): 1277-1288. 10.1177/1049732305276687.CrossRefPubMed
29.
go back to reference Ministry of Health, Welfare and Sport: Social support Act. Dutch translation: Wet maatschappelijke ondersteuning. 2006 Ministry of Health, Welfare and Sport: Social support Act. Dutch translation: Wet maatschappelijke ondersteuning. 2006
30.
go back to reference Danish Parliament: B 43, Parliamentary Resolution on Equalisation of Opportunities and Equal Treatment of Persons With Disabilities. 1993, . Danish Translation: Folketingsbeslutning om Ligestilling og Ligebehandling af Handicappede med Andre Borgere Danish Parliament: B 43, Parliamentary Resolution on Equalisation of Opportunities and Equal Treatment of Persons With Disabilities. 1993, . Danish Translation: Folketingsbeslutning om Ligestilling og Ligebehandling af Handicappede med Andre Borgere
31.
go back to reference Parliament of the United Kingdom: Equality Act 2010. 2010 Parliament of the United Kingdom: Equality Act 2010. 2010
32.
go back to reference Ministry of Health, Welfare and Spor: Law on General Insurance Against Special Medical Expenses. Dutch Translation: Algemene Wet Bijzondere Ziektekosten (AWBZ). 1967 Ministry of Health, Welfare and Spor: Law on General Insurance Against Special Medical Expenses. Dutch Translation: Algemene Wet Bijzondere Ziektekosten (AWBZ). 1967
34.
go back to reference Gjerris AC, Tabor A, Loft A, Christiansen M, Pinborg A: First trimester prenatal screening among women pregnant after IVF/ICSI. Hum Reprod Update. 2012, 18 (4): 350-359. 10.1093/humupd/dms010.CrossRefPubMed Gjerris AC, Tabor A, Loft A, Christiansen M, Pinborg A: First trimester prenatal screening among women pregnant after IVF/ICSI. Hum Reprod Update. 2012, 18 (4): 350-359. 10.1093/humupd/dms010.CrossRefPubMed
35.
go back to reference Morris JK: The National Down Syndrome Cytogenetic Register for England and Wales 2010. Annual Rep. 2011 Morris JK: The National Down Syndrome Cytogenetic Register for England and Wales 2010. Annual Rep. 2011
36.
go back to reference National Board of Health Denmark/Sundhedsstyrelsen: Fosterdiagnostik og Risikovurdering, 2003. 2003, 23. National Board of Health Denmark/Sundhedsstyrelsen: Fosterdiagnostik og Risikovurdering, 2003. 2003, 23.
37.
go back to reference NHS Fetal Anomaly Screening Programme: Screening for Down’s syndrome: UK NSC Policy Recommendations 2011–2014 Model of Best practice. 2011 NHS Fetal Anomaly Screening Programme: Screening for Down’s syndrome: UK NSC Policy Recommendations 2011–2014 Model of Best practice. 2011
38.
go back to reference Wortelboer EJ, Koster MP, Stoutenbeek P, Loeber JG, Visser GH, Schielen PC: Fifteen years of triple tests in The Netherlands; the life cycle of a screening test. Prenat Diagn. 2008, 28 (10): 950-955. 10.1002/pd.2091.CrossRefPubMed Wortelboer EJ, Koster MP, Stoutenbeek P, Loeber JG, Visser GH, Schielen PC: Fifteen years of triple tests in The Netherlands; the life cycle of a screening test. Prenat Diagn. 2008, 28 (10): 950-955. 10.1002/pd.2091.CrossRefPubMed
39.
go back to reference Wald NJ, Cuckle H, Brock JH, Peto R, Polani PE, Woodford FP: Maternal serum-alpha-fetoprotein measurement in antenatal screening for anencephaly and spina bifida in early pregnancy. Report of U.K. collaborative study on alpha-fetoprotein in relation to neural-tube defects. Lancet. 1977, 1 (8026): 1323-1332.PubMed Wald NJ, Cuckle H, Brock JH, Peto R, Polani PE, Woodford FP: Maternal serum-alpha-fetoprotein measurement in antenatal screening for anencephaly and spina bifida in early pregnancy. Report of U.K. collaborative study on alpha-fetoprotein in relation to neural-tube defects. Lancet. 1977, 1 (8026): 1323-1332.PubMed
41.
go back to reference Schielen PCJI, Koster MPH, Elvers LH, Loeber JG: Downsyndroom-Kansbepaling met de Eerstetrimester-Combinatietest 2006–2008. 2010, 230083001/2010 (Dutch only) Schielen PCJI, Koster MPH, Elvers LH, Loeber JG: Downsyndroom-Kansbepaling met de Eerstetrimester-Combinatietest 2006–2008. 2010, 230083001/2010 (Dutch only)
42.
go back to reference Schielen PCJI, Koster MPH, Elvers LH, Loeber JG: Downsyndroom-Kansbepaling met de Eerstetrimester-Combinatietest 2004–2006 (Deels 2007). 2008, 230024002/2008 Schielen PCJI, Koster MPH, Elvers LH, Loeber JG: Downsyndroom-Kansbepaling met de Eerstetrimester-Combinatietest 2004–2006 (Deels 2007). 2008, 230024002/2008
43.
go back to reference NHS Fetal Anomaly Screening Programme: Consent Standards Review Group. NHS Fetal Anomaly Screening Program Consent Standards and Guidance. 2011 NHS Fetal Anomaly Screening Programme: Consent Standards Review Group. NHS Fetal Anomaly Screening Program Consent Standards and Guidance. 2011
44.
go back to reference National Screening Committee UK: National Down’s Syndrome Screening Programme for England, A Handbook for Staff. 2004 National Screening Committee UK: National Down’s Syndrome Screening Programme for England, A Handbook for Staff. 2004
45.
go back to reference RIVM-Centraal Orgaan: Patient Leaflet-Informatie Over de Screening op Downsyndroom Information on Screening for Down’s Syndrome. 2011 RIVM-Centraal Orgaan: Patient Leaflet-Informatie Over de Screening op Downsyndroom Information on Screening for Down’s Syndrome. 2011
46.
go back to reference NHS UK National Screening Committee: Screening Tests for you and Your Baby. 2012 NHS UK National Screening Committee: Screening Tests for you and Your Baby. 2012
47.
go back to reference Komiteen for Sundhedsoplysning: Prenatal Examinations UNDERSØGELSER AF DET UFØDTE BARN -Engelsk. 2005 Komiteen for Sundhedsoplysning: Prenatal Examinations UNDERSØGELSER AF DET UFØDTE BARN -Engelsk. 2005
48.
go back to reference KNOV Koninklijke Nederlandse Organisatie van Verloskundigen/The Royal Dutch Organisation of Midwives: Tarieven 2014. 2014 KNOV Koninklijke Nederlandse Organisatie van Verloskundigen/The Royal Dutch Organisation of Midwives: Tarieven 2014. 2014
49.
go back to reference Meijer S, Stemerding D, Hoppe R, Schielen P, Loeber G: Prenatale screening: een (on) getemd maatschappelijk probleem?. Tijdschrift voor Gezondheidswetenschappen. 2010, 88 (8): 460-Dutch onlyCrossRef Meijer S, Stemerding D, Hoppe R, Schielen P, Loeber G: Prenatale screening: een (on) getemd maatschappelijk probleem?. Tijdschrift voor Gezondheidswetenschappen. 2010, 88 (8): 460-Dutch onlyCrossRef
50.
go back to reference Kirejczyk M, Rip A, van Berkel D, Oortwijn W, Reuzel R, van den Berg–Schröer I, Toom V: Ruimte voor rechtvaardigheid. Reconstructie van de dynamiek in de processen van besluitvorming over toelating van vier medische interventies: IVF, maternale serumscreening, taxoiden en rivastigmine. 2003, Dutch only Kirejczyk M, Rip A, van Berkel D, Oortwijn W, Reuzel R, van den Berg–Schröer I, Toom V: Ruimte voor rechtvaardigheid. Reconstructie van de dynamiek in de processen van besluitvorming over toelating van vier medische interventies: IVF, maternale serumscreening, taxoiden en rivastigmine. 2003, Dutch only
51.
go back to reference Seminar W: Debatteren over genetische screeningscriteria. 2005, Houten: Prelum, (Dutch only) Seminar W: Debatteren over genetische screeningscriteria. 2005, Houten: Prelum, (Dutch only)
52.
go back to reference van El CG, Pieters T, Cornel M: Genetic screening and democracy: lessons from debating genetic screening criteria in the Netherlands. J Community Genet. 2012, 3 (2): 79-89. 10.1007/s12687-011-0063-z.CrossRefPubMed van El CG, Pieters T, Cornel M: Genetic screening and democracy: lessons from debating genetic screening criteria in the Netherlands. J Community Genet. 2012, 3 (2): 79-89. 10.1007/s12687-011-0063-z.CrossRefPubMed
53.
go back to reference Kaposy C: A disability critique of the new prenatal test for Down syndrome. Kennedy Inst Ethics J. 2013, 23 (4): 299-324. 10.1353/ken.2013.0017.CrossRefPubMed Kaposy C: A disability critique of the new prenatal test for Down syndrome. Kennedy Inst Ethics J. 2013, 23 (4): 299-324. 10.1353/ken.2013.0017.CrossRefPubMed
54.
go back to reference Garcia E, Timmermans DR, van Leeuwen E: Rethinking autonomy in the context of prenatal screening decision-making. Prenat Diagn. 2008, 28 (2): 115-120. 10.1002/pd.1920.CrossRefPubMed Garcia E, Timmermans DR, van Leeuwen E: Rethinking autonomy in the context of prenatal screening decision-making. Prenat Diagn. 2008, 28 (2): 115-120. 10.1002/pd.1920.CrossRefPubMed
55.
go back to reference van den Berg M, Timmermans DR, Kleinveld JH, van Eijk JT, Knol DL, van der Wal G, van Vugt JM: Are counsellors’ attitudes influencing pregnant women’s attitudes and decisions on prenatal screening?. Prenat Diagn. 2007, 27 (6): 518-524. 10.1002/pd.1720.CrossRefPubMed van den Berg M, Timmermans DR, Kleinveld JH, van Eijk JT, Knol DL, van der Wal G, van Vugt JM: Are counsellors’ attitudes influencing pregnant women’s attitudes and decisions on prenatal screening?. Prenat Diagn. 2007, 27 (6): 518-524. 10.1002/pd.1720.CrossRefPubMed
56.
go back to reference Redelmeier DA, Rozin P, Kahneman D: Understanding patients’ decisions. Cognitive and emotional perspectives. JAMA. 1993, 270 (1): 72-76. 10.1001/jama.1993.03510010078034.CrossRefPubMed Redelmeier DA, Rozin P, Kahneman D: Understanding patients’ decisions. Cognitive and emotional perspectives. JAMA. 1993, 270 (1): 72-76. 10.1001/jama.1993.03510010078034.CrossRefPubMed
57.
go back to reference Abhyankar P, Summers BA, Velikova G, Bekker HL: Framing options as choice or opportunity. Does the frame influence decisions?. Med Decis Making. 2014, 14 (34(5)): 567-582.CrossRef Abhyankar P, Summers BA, Velikova G, Bekker HL: Framing options as choice or opportunity. Does the frame influence decisions?. Med Decis Making. 2014, 14 (34(5)): 567-582.CrossRef
58.
go back to reference Bekker H, Modell M, Denniss G, Silver A, Mathew C, Bobrow M, Marteau T: Uptake of cystic fibrosis testing in primary care: supply push or demand pull?. BMJ. 1993, 306 (6892): 1584-1586. 10.1136/bmj.306.6892.1584.CrossRefPubMedPubMedCentral Bekker H, Modell M, Denniss G, Silver A, Mathew C, Bobrow M, Marteau T: Uptake of cystic fibrosis testing in primary care: supply push or demand pull?. BMJ. 1993, 306 (6892): 1584-1586. 10.1136/bmj.306.6892.1584.CrossRefPubMedPubMedCentral
59.
go back to reference Carroll FE, Al-Janabi H, Flynn T, Montgomery AA: Women and their partners’ preferences for Down’s syndrome screening tests: a discrete choice experiment. Prenat Diagn. 2013, 33: 449-456. 10.1002/pd.4086.CrossRefPubMed Carroll FE, Al-Janabi H, Flynn T, Montgomery AA: Women and their partners’ preferences for Down’s syndrome screening tests: a discrete choice experiment. Prenat Diagn. 2013, 33: 449-456. 10.1002/pd.4086.CrossRefPubMed
60.
go back to reference Garrouset C, Le J, Maurin E: The choice of detecting Down syndrome: Does money matter?. Health Econ. 2011, 20: 1073-1089. 10.1002/hec.1762.CrossRef Garrouset C, Le J, Maurin E: The choice of detecting Down syndrome: Does money matter?. Health Econ. 2011, 20: 1073-1089. 10.1002/hec.1762.CrossRef
Metadata
Title
Explaining variation in Down’s syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews
Publication date
01-12-2014
Published in
BMC Health Services Research / Issue 1/2014
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/1472-6963-14-437

Other articles of this Issue 1/2014

BMC Health Services Research 1/2014 Go to the issue