Explaining low uptake for Down syndrome screening in the Netherlands: (and predicting utilisation of other programmes)

Abstract

In the Netherlands, only a quarter of all pregnant women take part in the current Down syndrome screening(DSS) programme. Compared to other Northern European countries, Dutch uptake rates are very low. This thesis concentrates on the test-utilisation of DSS, in particular the factors impeding or enabling women to use this test. Both healthcare system factors and individual factors were studied with regard to their effect on utilisation, to understand the low Dutch uptake. Additionally, this study aimed at investigating future foetal and maternal screening tests and to reflect on future utilisation. Innovations in prenatal screening provide pregnant women with more adequate and reliable test opportunities regarding their own health, as well as that of their foetus. Advances in testing, should ideally contribute to better pregnancy outcomes, but also present pregnant women with all its inherent disadvantages and challenges. In this thesis we have taken a multilevel approach to addressing the aim of the study, and therefore different methods have been used to answer the various subquestions. Thus, throughout this thesis, both quantitative research, documentary analysis (desk research), qualitative research, and a mix of quantitative and qualitative methodologies, also known as mixed method research were used. In the Netherlands, the set-up of the DSS policy is the result of a debate preceding the implementation of this test with sometimes conflicting arguments ( ‘equal access’ versus ‘fear for routinisation’). As a result, DSS is offered to all women, but at the same time conveys the message that DSS is not ‘just routine’ by the strong implementation of the ‘right not to know’ principle and an additional fee for women aged 36 and up. The effect of this is that Dutch women are aware of the ethical considerations they might have to face when accepting the test. In general they have a positive attitude towards Down syndrome, which is for most of them not a reason to terminate their pregnancy. At the same time, the age-related reimbursement policy gave women the impression that DSS in younger women is unnecessary, while older women experienced being encouraged to take part . A combination of these characteristics most probably accounts for the low Dutch uptake rates For non-invasive prenatal testing (NIPT), a potential future substitute for DSS, uptake is expected to increase, due to favourable test characteristics. Although technological improvements will make some decisions easier, ethical dilemmas remain the same. Because of safe and reliable test characteristics, more women will probably use NIPT to prepare for the birth of a child with a disability, instead of terminating their pregnancy. If preeclampsia screening were to be implemented, it can be expected that pregnant women will be willing to participate. It provides them with a feeling of control and responsibility towards their pregnancy, their child and their own health. Furthermore, improved risk identification can potentially be of added value for prenatal care. Nevertheless, this only holds true for a test with an acceptable sensitivity and specificity, and treatment options that will improve pregnancy outcomes.