title: Explaining variation in Down's syndrome screening uptake: comparing the Netherlands with England and Denmark using documentary analysis and expert stakeholder interviews.
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.
authors.affiliation: Department of Obstetrics, University Medical Centre Utrecht, Huispost KE 04,123,1, Postbus 85090, 3508 AB Utrecht, The Netherlands. N.crombag@umcutrecht.nl.
authors.forename: Neeltje M T H
authors.initials: NM
authors.lastname: Crombag
authors.forename: Ynke E
authors.initials: YE
authors.lastname: Vellinga
authors.forename: Sandra A
authors.initials: SA
authors.lastname: Kluijfhout
authors.forename: Louise D
authors.initials: LD
authors.lastname: Bryant
authors.forename: Pat A
authors.initials: PA
authors.lastname: Ward
authors.forename: Rita
authors.initials: R
authors.lastname: Iedema-Kuiper
authors.forename: Peter C J I
authors.initials: PC
authors.lastname: Schielen
authors.forename: Jozien M
authors.initials: JM
authors.lastname: Bensing
authors.forename: Gerard H A
authors.initials: GH
authors.lastname: Visser
authors.forename: Ann
authors.initials: A
authors.lastname: Tabor
authors.forename: Janet
authors.initials: J
authors.lastname: Hirst
mesh_terms: D000328:Adult; D003466:Cultural Characteristics; D003657:Decision Making; D003718:Denmark; D004314:Down Syndrome / Q000175:diagnosis*; D004739:England; D005260:Female; D006291:Health Policy; D006801:Humans; D007407:Interviews as Topic; D009313:National Health Programs; D009426:Netherlands; D011247:Pregnancy; D011296:Prenatal Diagnosis / Q000706:statistics & numerical data*; D036301:Qualitative Research; D012959:Socioeconomic Factors