Factors that influence women*s utilization of prenatal screening for Down*s syndrome. Optimizing decision making and refining current and future screening policies by studying differences in uptake rates, between three European countries*

Down*s syndrome screening (DSS) is performed in the first trimester of
pregnancy, with a foetal nuchal translucency measurement and quantification of
biomarkers in maternal serum. Its goal is to inform prospective parents on
their chance of having a Down*s syndrome (DS) affected child in a timely
manner, in order to allow them the opportunity to act, that is to prepare for
the birth of a child with DS or termination of pregnancy if DS is diagnosed
(Gezondheidsraad 2007). In the Netherlands, since 2007 all women are informed
about the possibility of prenatal screening for DS. Women who express interest
in the screening, will be provided with further information on the test;
information on decision-making, risk-assessment, possible subsequent diagnostic
evaluation and possible subsequent termination of pregnancy. It is not the goal
of this information to increase uptake, but to enable pregnant women and their
partners to make autonomous informed decisions on participation on screening
tests or otherwise. Because of the possible ethical implications of prenatal
screening informed decision-making is necessary.
Since the implementation of the test in Northern Europe, in most countries
prenatal screening for Down*s syndrome forms part of regular prenatal care.
Uptake rates in DSS in the Netherlands are low as compared to other Northern
European countries (27% in The Netherlands versus 66% in the UK and 99% in
Denmark).
Social and cultural factors as well as the availability of resources and the
prevailing legislation regarding TOP are factors that influence these uptake
rates (Boyd et al 2008), however, in the mentioned countries these factors are
generally similar. Besides in Northern Europe, autonomous choice in DSS, is
highly valued and carried out by healthcare professionals. Balanced and
non-directive information prior to screening is provided to facilitate pregnant
women in making autonomous and informed decisions {{145 van den Heuvel,A. 2009;
146 van den Heuvel,A. 2008; 142 Hall,S. 2007}}. Therefore, the observed
difference in uptake of DSS between countries that otherwise show close
resemblance, particularly regarding healthcare policy, social and cultural
factors (including non-directiveness of counselling, autonomous and informed
choice) is hard to explain.
These differences require a thorough analysis of factors that influence women's
utilization of screening. The results of the analysis will provide healthcare
professionals and policy makers with information, directly collected from
pregnant women, on reasons to accept or decline screening. This knowledge is
relevant as it helps to optimize current screening policy and counselling.
Previous research on women*s reasons for participation in Down*s Syndrome
screening has commonly focused on the relationship between attitudes towards
undergoing testing and actual testing behaviour. Health care beliefs
(attitudes, values and knowledge) will continue to improve our ability to
explain healthcare use, but the Northern-European uptake differences suggest
correlations not only with individual characteristics, such as health beliefs,
but also with healthcare system characteristics.
A suitable model to analyze the influence of these different levels is the
Andersen model (1). This model not only considers the individual
characteristics (predisposing factors e.g. health beliefs and need factors,
such as (perceived) health/risk) but also health care characteristics (enabling
factors: e.g. availability, accessibility, and their interaction.

The striking difference in uptake of Down*s Syndrome screening between
countries that otherwise show close resemblance, particularly regarding
healthcare policy, social and cultural factors (including non-directiveness of
counselling, autonomous and informed choice instigated us to conduct this
study. We therefore question whether the Dutch uptake rate of 26% is a correct
reflection of pregnant women*s preferences. The aim of this study is to answer
the following questions: (1) What individual and environmental factors (need,
predisposing factors and enabling) correlate with the participation for Down*s
Syndrome screening in Dutch, Danish and British pregnant women? (2) To what
extent can these factors explain the differences in uptake rates? (3) To what
extent do the uptake rates reflect women*s preferences in Down*s Syndrome
screening?
The results of the study will provide us with information directly from the
demand side and will lead to unique information, as it not only considers
attitudes and personal values, but also the surrounding environment(need,
enabling factors and predisposing factors) and its relation with decision
making and subsequent use.

In a qualitative study, we will collect data by using focus group interviews,
consisting of Dutch pregnant women (purposive sampling). The aim of the focus
group interview is to understand how women decide on utilization of prenatal
screening for Down*s syndrome; what determinants are decisive in participation
in Down's syndrome screening, pre en post counselling? By exploring feelings,
needs, perceptions, attitudes, values, beliefs and thoughts on the subject we
will collect data on reasons why women decline or accept prenatal testing for
Down*s syndrome. Based on the Andersen model of health care use we will explore
which factors significantly correlate with declining or accepting prenatal
screening for Down*s syndrome. The following questions will be used in the
group interviews: (1) Have you thought about participating in prenatal
screening for Down*s Syndrome, why or why not?(2) What items are crucial in
accepting or declining the offer of prenatal screening? ( Need, Predisposing,
Enabling). Preceding the interviews we will collect data on demography,
perceived health, risk perception, illness perception, anxiety, knowledge and
uptake rates via validated questionnaires. Each interview will be audio and
videotaped and transcribed verbatim. Data analysis will be performed on basic
content and categorized into themes of the Andersen model. The results will be
used as a base for large-scale quantitative questionnaires.

Time investment of three hours, including coffeebreaks and introduction and
debriefing. Total interview time is 120 minutes. No risks. Preceding the
interviews participants fill in a questionnaire (30 minutes).
total time investment (including preceding questionnaire, introduction, break
and debriefing) 3,5 hours.