Use of a patient decision aid for prenatal screening for Down syndrome: what do pregnant women say?

We identified factors influencing pregnant women’s use of a PtDA for prenatal screening for DS. We recruited eligible pregnant women from three different kinds of health care center (a family medicine site, a birthing center and a university hospital) representing diverse clienteles. A total of 54 salient beliefs were mapped onto nine of the 12 domains of the TDF. Of their own accord, participants did not express any salient belief that mapped onto the three theoretical domains that we had excluded. Overall, the three most frequently-mentioned factors were: 1) influence of the woman’s partner, 2) presentation of the PtDA by a health professional and a discussion about it, and 3) lack of knowledge about PtDAs. Our results lead us to make four main observations.

First, as we observed, even if participating women identified advantages to using a PtDA about prenatal screening for DS, they also identified disadvantages, suggesting a certain ambivalence overall. On the one hand they said it provided useful information for decision-making, but they also said the amount of information could create confusion during decision-making. As reported in other studies assessing factors influencing the uptake of innovative tools in clinical practice [18, 30], we observed that a single factor may be perceived both as a barrier and a facilitator. In our case, the same factor (i.e. information giving) can be both positive (i.e. more information is helpful) and negative (i.e. too much of it is confusing). Indeed, attitude ambivalence has been shown to moderate the relationship between social norms and behaviour [31]. Research directed specifically to reducing this attitudinal ambivalence regarding information about prenatal tests could inform the improvement of PtDAs [32]. The next step would be to quantitatively assess the relative importance of these two conflicting aspects of the same influential factor to better devise a population approach to implementing PtDAs for prenatal screening for DS. Developers should clearly not overload PtDAs with information, and implementation strategies should be more individualized. In addition, in real life, the physician may not take this much time to go through the PtDA page by page, but in the second visit, as shown in the video, he/she would check that the couple understands the information and what concerns them most about the options. Decision aids alone cannot replace patient-physician interaction [33].

Second, these study results provide a more in-depth understanding of pregnant women’s opinions regarding the use of a PtDA for prenatal screening. For example, although an overwhelming majority of women mentioned that the PtDA was useful for obtaining information for decision-making, they also shared with us that knowing this information on the risks and benefits of the options would most likely increase their stress. This fear of stressful information has been reported before [34, 35]. Moreover, individuals tend to be bad forecasters: they anticipate either better or worse outcomes than can be expected based on the evidence [36]. PtDAs inform patients about potential outcomes of all options, good and bad, and help individuals better understand the probabilities associated with potential outcomes. This prompts patients to reflect then and there on risk, loss, regret, or the challenges to personal life values entailed in the decision they are facing. PtDAs raise patients’ awareness of potential outcomes they may want to avoid, which may provoke anxiety at the time of decision-making, but they also ensure that patients have realistic expectations about their choices [13, 37, 38] and give them the chance to resolve their personal uncertainties about the decision beforehand. Future implementation strategies for PtDA should therefore include managing patients’ perceptions of the anxiety they fear that using PtDA might cause, and affective support for the stress if it occurs.

Third, the most frequently reported factor influencing the use of the PtDA was the woman’s partner, with the health professional in second place. Both these findings have been reported before [38, 39]. Most of the women in this study were in a couple; in addition, the presence of the partner in the video they watched before the interviews may have disposed some of them to consider their partner as their most important influence. Perhaps the use of the PtDA also made the women aware that the decision was a values-sensitive one, in which case they would naturally want to discuss it with someone close to them (partner) or a trustworthy health professional, and have more information about it. Together these results highlight the importance of supportive relationships at the personal and professional level when making difficult health-related decisions and the need for training in this field [40]. Although promising, PtDAs alone may not be enough to ensure high quality decision-making for pregnant women and should be accompanied by training of health professionals in shared decision-making [41]. Future research on interventions should consider both the partner and the health professional in the effective implementation of PtDAs about prenatal screening for DS.

Lastly, even if one of the stated aims of PtDAs is to help patients clarify and communicate the personal values they associate with the available options [42], only a small number of participants said that the PtDA could help them identify what is most important for them and thus help them make the decision that best meets their values and their preferences. Other studies [43, 44] show that in the context of prenatal screening, one of the ethical principles is personal autonomy framed in terms of women’s choice [44], so it was surprising that only a few women mentioned the PtDA could help them clarify personal values. Further studies should emphasize the relevance of identifying and expressing personal values as a basis for good decision-making.

This study has a few limitations. First, the characteristics of our sample population do not represent all pregnant women across the sociodemographic spectrum. Women eligible for this study were highly educated and at low risk of complications or of carrying a fetus with DS (they were mostly younger than 35 years old). Although we made sure to recruit women from diverse clinical contexts, we observed few differences between sites. Second, at times it was difficult to keep to the main subject of the interview because participants focused on the behavior of undertaking the prenatal test rather than the behavior of using a PtDA to decide about the test, which was the behavior of interest of this study. This may have affected the results of our study. However, our experienced interviewers were able to redirect the conversation to the studied behavior and avoid information bias.

Third, as we mentioned, during the analysis a second researcher checked the first researcher’s tree-node. It may have been preferable for her to independently develop her own tree-node first. Nevertheless, we consider that what is most important is a systematic and thorough coding process, whether the coding is carried out by a single conscientious researcher or by a whole team of coders [45].

Lastly, although we were aiming to understand the factors influencing pregnant women’s use of a PtDA for prenatal screening for DS along the whole prenatal care pathway (i.e. during health professional visits, at home with family members or friends, and on their own), the video may have triggered only those beliefs associated with use of the PtDA during a consultation with a health professional. However, we made sure that the video included two visits with the health professional and also that participants understood they could use the PtDA outside the consultation, as was also recommended by the health professional in the video.