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

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 ( 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

EVS Trend File 1981-2017 – Sensitive Dataset

The European Values Study is a large-scale, cross-national and longitudinal survey research program on how Europeans think about family, work, religion, politics, and society. Repeated every nine years in an increasing number of countries, the survey provides insights into the ideas, beliefs, preferences, attitudes, values, and opinions of citizens all over Europe. The EVS Trend File 1981-2017 is constructed from the five EVS waves and covers almost 40 years. In altogether 160 surveys, more than 224.000 respondents from 48 countries/regions were interviewed. It is based on the updated data of the EVS Longitudinal Data File 1981-2008 (v.3.1.0) and the current EVS 2017 Integrated Dataset (v.5.0.0). For the EVS Trend File, a Restricted-Use File (ZA7504) is available in addition to the (factually anonymised) Scientific-Use File (ZA7503). The EVS Trend File – Sensitive Dataset (ZA7504) is provided as an add-on file. In addition to a small set of admin and protocol variables needed to merge with the SUF data, the Sensitive Dataset contains the following variables that could not be included in the scientific-use file due to their sensitive nature: W005_3 Job profession/industry (3-digit ISCO88) - spouse/partner EVS 2008W005_3_01 Job profession/industry (3-digit ISCO08) - spouse/partner EVS 2017W005_4 Job profession/industry (4-digit ISCO88) - spouse/partner EVS 2008X035_3 Job profession/industry (3-digit ISCO88) – respondent EVS 1999, EVS 2008 X035_3_01 Job profession/industry (3-digit ISCO08) - respondent EVS 2017X035_4 Job profession/industry (4-digit ISCO88) – respondent EVS 1999, EVS 2008 x048c_n3 Region where the interview was conducted (NUTS-3): NUTS version 2006 EVS 2008X048J_N3 Region where the interview was conducted (NUTS-3): NUTS version 2016 EVS 2017X049 Size of town (8 categories) EVS 2008, EVS 2017 Detailed information on the anonymization process in the EVS Trend File is provided in the EVS Trend File Variable Report