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

Abstract

BackgroundThe 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.MethodsWe 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.ResultsThere 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.ConclusionsThis 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6963-14-437) contains supplementary material, which is available to authorized users.

Parental Decisions about Prenatal Screening and Diagnosis among Infants with Trisomy 21 in a National Cohort with High Uptake of Combined First-Trimester Screening

“…The proportion declining cFTS is low compared to other European countries [2] . A Dutch study on the impact of macrolevel demographic, social and health care and delivery factors on the uptake of cFTS identified a charging fee for above-standard health care and an emphasis on 'right not to know' as being factors leading to a reduced uptake.…”

“…A Dutch study on the impact of macrolevel demographic, social and health care and delivery factors on the uptake of cFTS identified a charging fee for above-standard health care and an emphasis on 'right not to know' as being factors leading to a reduced uptake. The social context and positive framing of the offer at the service level could play a role in the high uptake in Denmark [2] . However, a risk assessment for T21 should only be obtained after making an informed decision, and thus, a part of the population is expected to decline screening for T21.…”

“…Numerous countries have introduced screening for trisomy 21 (T21) [1][2][3] . A combined first-trimester risk assessment for T21 based on maternal age, thickness of the nuchal translucency (NT) measured by ultrasound at 11-14 weeks of gestation and two biochemical markers -free beta human chorionic gonadotropin (β-hCG) and pregnancy-associated plasma protein-A (PAPP-A) -has been a public offer to all pregnant women in Denmark since 2004 [4] .…”

Ethics of routine: a critical analysis of the concept of ‘routinisation’ in prenatal screening

“…Other studies showed a decrease in children born with Down’s syndrome of 28%–50% in the Netherlands and 18%–59% in Western Australia 25 44. Those who fear an increase of the abortion rate refer to the high number of abortions in, for example, Denmark, but due to cultural differences between countries it might be hasty to conclude that in the Netherlands the uptake and abortion rate will increase to the same extent 45. This remains to be seen in practice.…”

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals

“…More nuanced differences in DSS programmes and policies may also impact on preferences. Crombag et al 35 compared DSS programmes in Denmark, the Netherlands, and UK and speculated that variation in DSS uptake rates between these countries are influenced by how the offer of DSS is framed and viewed. For example, in Denmark (highest uptake) DSS is free and is offered in a social context where screening is viewed by many women as a routine part of prenatal care.…”