Marc Gourmelon, MD, Cécile Bour, MD
September 8, 2020
A French study in 2016 showed that when women are given slightly more objective information about breast cancer screening by mammography, they are less likely to attend it.
https://www.oncotarget.com/article/7332/text/ : "Decision aid on breast cancer screening reduces attendance rate: results of a large-scale, randomized, controlled study by the DECIDEO group"
Background and methods
This study was conducted in 2016 by Aurélie BOURMAUD who was working at the time for the Cancer Institute of Loire Lucien Neuwirth 1408, Saint Priest en Jarez, France, very invested in screening as shown by her support for the events of Pink October .
She is now an Associate Professor in public health and currently works at the clinical epidemiology unit of the Robert Debré Hospital (Paris) and at the University Paris Diderot. Her research themes are prevention, patient education, complex intervention and patient care pathways.
The summary of his study indicates the following:
“The aim of this study was to assess the impact of a decision aid leaflet on the participation of women invited to participate in a national breast cancer screening program. This Randomized, multicentre, controlled trial. »
« 16 000 women were randomized and 15 844 included in the modified intention-to-treat analysis. »
« This large-scale study demonstrates that the decision aid reduced the participation rate. The decision aid activate the decision making process of women toward non-attendance to screening. These results show the importance of promoting informed patient choices, especially when those choices cannot be anticipated. »
In introduction is explained :
« Benefits in terms of mortality reduction are not clearly documented. It has been suggested that prevention campaigns should change from persuasive approaches to approaches based on information and women’s decision empowerment. »
In order to carry out this study, a decision support tool, DECIDEO, was distributed to the participants (Outil DECIDEO, in two languages starting on page 7).
« A decision aid, known as the DECIDEO leaflet, was developed following international guidelines for the ‘provision of information and the construction of decision aid tools ».
The hypothesis of this study was as follows:
« Our hypothesis was that this decision aid would increase informed choice in the intervention group. We estimated the effect of this written decision aid on informed choice, by measuring the participation rate of a population-based breast cancer screening. »
This 2016 study was brought to our attention because it is cited by Italian authors who demonstrated that manipulating the message to women likely to get screened by mammography, increases their participation in screening. We had recently analyzed this study (Italian study analysis).
The Italian study shows that information on the risks of screening reduces women's participation in breast screening, which is a real problem for the Italian authors. They therefore suggest manipulating the information given to women by selectively presenting the negative effects (according to them) of not getting screened.
What are the results of the 2016 study by A.Bourmaud et al.?
“The overall participation rate at 12 months (Table 2), was significantly higher in the control group: 42.13% versus 40.25% in the decision aid group (p = 0.02).”
This clearly means that women participating in the decision support group were less likely to be screened than women in the control group.
In other words, when women are given information about screening, they attend less the screening. This finding is critical.
“This study is the first to compare a decision aid to real life: the control group consisted of women aged 50 to 74, receiving the usual information about screening. Our results are however in accordance with previous trials in this field suggesting a decreased attendance as results of the implementation of a decision aid on cancer screening”.
“Our results demonstrate that a decision aid, designed following specific guidelines, sent with a formal invitation to attend breast cancer screening, resulted in a lower attendance rate and a decrease in the delay of attendance for the women who did participate.”
This confirms what the recent Italian study showed: in order to increase participation in breast cancer screening by mammography, the information must be manipulated in the sense of less disclosure of the true risk/benefit balance of screening.
Discussion and analysis
A-Analysis of the tool
According to the authors themselves, the DECIDEO tool has some shortcomings, and not the slightest:
"Another limitation (of the study, editor's note) is that recent data on over-diagnosis and over-treatment have not been implemented in the decision aid. »
These elements to be informed are however capital among the risks of screening.
The tool's figures (starting on page 8) are not referenced anywhere, and, as stated in the introduction, once again in the authors' own words: "The benefits in terms of mortality reduction are not clearly documented".
However, what women want to know first and foremost when they undergo a medical procedure is whether it can guarantee them less death from the disease and whether the procedure has no major side effects.
Overdiagnosis and overtreatment being the two major adverse effects of screening, there is clearly a form of manipulation by not communicating to women these two fundamental and essential data for their health and well-being.
Furthermore, it is noteworthy that contrary to what is implied by the references cited in the study (reference 26 on IPDAS criteria), this tool distributed to participants in the study does not meet IPDAS criteria in any way.
The IPDAS criteria are very specific requirements that the tool must meet to guarantee a high quality of information.
The mention of overdiagnosis and overtreatment is therefore an absolute must.
In this respect, we were already concerned about the shortcomings in the completeness and quality of the information provided by the National Cancer Institute itself, whose mission it is, however, to do it .
B-the ethical problem
In this study, as in the Italian one, the authors have a question that does not miss to surprise:
"the DECIDEO leaflet discouraged older women, as well as those with a low mean household income, from attending the national breast cancer screening program. “
Women with a lower educational level could have had difficulty in understanding the decision aid. Those two phenomena could partly explain the effect of the DECIDEO leaflet on those specific populations, additional studies being needed to confirm this hypothesis.
This hypothesis put forward by the authors, seems to come straight from their lack of knowledge of the social environment of modest women to which, it seems to us, "social class beliefs " are added.
Indeed, there is an aspect that is not at all addressed nor only mentioned by the authors, but that any "field" doctor understands very quickly, provided that he offers an attentive ear to the most socially and economically deprived patients. Low-income women, and even populations with a low socio-economic level in general, do not have such prohibitive problems of understanding that the authors of the DECIDEO group imply that they do, if indeed efforts are made to make medical information available to them.
On the other hand, these populations fear the disease much more than others. In fact, falling ill makes them even poorer and more ostracized; women who have low-paying jobs panic about losing this often thankless job and being deprived of an income that is indispensable to the family. The jobs of these women often require physical commitment (household, home work, labour); they know that they will no longer have the professional skills required of them after certain treatments, and they fear being further discredited as " ill " at the expense of society. Further studies could demonstrate this, but simply by questioning these economically weak people, the diagnosis appears obvious to explain their lesser compliance with screening recommendations, of all kinds, moreover.
The actual questioning of the need to provide honest information that might decrease participation seems unethical to us, since the obligation to provide fair and complete information is stated in the law .
« In this large, randomized, clinical trial we observed that the DECIDEO decision aid resulted in decreased breast cancer screening attendance although it accelerated the decision to attend, for those women who did attend. These results suggest that this leaflet have accomplished its main purpose which was to inform the decision-making process.
We believe that our results highlight the dilemma between the goals of population health initiatives and individual choices.”
This study went unnoticed.
And for reason, it proves that the more exhaustive the information given to women about breast cancer screening by mammography, the less they participate in the organized screening program set up and promoted by official structures.
And we are surprised that the DECIDEO form, far from meeting the IPDAS standards of exhaustive information on screening, achieves such results in terms of reduction in recourse to screening.
The more women are informed, the less incentive campaigns such as the Pink October campaign can reach them.
Screening uptake does not have strong evidence of an effect on mortality reduction, as stated at the outset in the introduction :
“Benefits in terms of mortality reduction are not clearly documented [10-13]. It has been suggested that prevention campaigns should change from persuasive approaches to approaches based on information and women’s decision empowerment ”
We must then stop trying at all costs to persuade women to get screened. We have to stop manipulating at such a point the so-called decision support tools. Instead, we must inform women, so they can make an informed decision.
This represents nothing less than the conclusions of the consultation on screening mammography in 2015 .
In the end, one rather amusing thing to note is that even with a biased decision support tool, such as DECIDEO is, women are very difficult to fool and send to a screening test to which, despite the misleading and pink incentives, they do not massively comply…
It therefore seems obvious to us that, as requested by the 2015 citizens' consultation, and in accordance with the ever-increasing scientific evidence on the ineffectiveness of mammography screening, this organized breast cancer screening by mammography has to be stopped in France.
Read also our previous article on the manipulation of women, as a scientific topic.
 Law on the obligation to provide information in the French public health code: