Prenatal screening for Down syndrome: popularity, perceptions and factors associated with acceptance or refusal of testing

Abstract

Background Prenatal screening tests for aneuploidies have become increasingly used in maternal and fetal medicine. Given that all pregnancies associate a potential risk of Down syndrome, adequate knowledge of the tests, and their characteristics as well as facilitating decision-making autonomy are fundamental rights that must be respected. Objectives Identification of the popularity of the tests, their perception and the factors associated with the acceptance or refusal to perform them. Methods A cross-sectional study was carried out in the South-East region of Romania, between April and September 2016. The data were collected from 275 postpartum women. The instrument used was a self-administered questionnaire and the data obtained were processed using the IBM SPSS 20.0 statistical software (IBM Corp., Armonk, NY, USA). The normality of the distribution was analyzed with Chi-square, Kolmogorov–Smirnov and Shapiro–Wilk tests. Factorial Analysis was carried out for the Principal Components of the scales for the reasons for performing and not performing. Results The 2nd Trimester Morphology had the popularity as well as the highest rate of accomplishment (98.2% respectively 67.6%) among the investigated women. It is also the preferred recommendation of the specialists (81.1%). The least popular test was the TPNI, only 13.1% of the participants heard about it, as it was recommended in only 2% of the situations. Most of the participants perceived the screening tests as essential and useful, but 43.3% considered that they become mandatory if the doctor recommends them. The acceptance of the child with DS and the misperception of the risk were the main factors associated with the refusal of the test and the compliance with the recommendation of the specialist (system confidence), and social influence (non-acceptance of the Down syndrome by the society) were the main factors associated with the acceptance. Conclusions The number of women who made the decision to accept the test was greater than the ones who refused. The amendment is that acceptance was based on the custom of socio-economic-medical compliance and responsibility. For many women, the motivation of acceptance meant alignment with the normality directed by the society and the system. Even the popularity of the tests carries the imprint of the beliefs and values of the system and the specialists involved. For an adequate perception and an autonomous and informed choice of women, the screening program must include adequate information and communication services by involving specialists responsible for multidisciplinary competencies. The percentage of completion and the type of test performed almost perfectly align with the recommendations received.