European guidelines on breast cancer screening and diagnosis

Should a decision aid that explains the benefits and harms of screening vs. an invitation letter be used for informing women about the benefits and harms of participating in an organised population-based breast cancer screening programme?

The decision on this recommendation takes into account the balance between desirable and undesirable effects that probably favours the use of decision aids, but in the context of low certainty of the evidence. The desirable anticipated effects were judged as moderate due to increases in informed decision-making and participants’ adequate knowledge about screening, while the undesirable anticipated effects were judged as trivial.

The GDG highlighted the importance of the quality of the decision aids. In particular, they should be evidence-based and appropriate to the context of their use.

The GDG considered the importance of tailoring the decision aids to the cultural contexts and level of literacy of the populations to whom they are distributed. 

• The GDG does not support any specific decision aid that was included in the reviewed evidence. However, decision aids should be appropriately developed, evidence-based and tailored to the context of use.
• The GDG considered that the recommendation for use of decision aids applies to all age groups.
• Decision aids should be tailored to the cultural-context and level of literacy of the population(s) for whom they are to be used.
• The GDG supports the use of pictograms and graphical representations, where possible, in the form of decision aids, including a focus on graphics designed to explain the changes in both relative risk and absolute risk, for breast cancer screening. For more details on this, refer to the ECIBC recommendations on the use of numbers, infographics and storytelling.

The GDG felt that the quality of decision aids needs to be high and that it is important to monitor and evaluate their implementation, as well as continue to study their use in research contexts.

• Develop best practices for decision aids used in Europe to educate women on breast cancer screening.
• Evaluate the best ways of describing information in decision aids, including a comparison of the use of graphics versus text explanations for various populations.
• Assess the perspectives, understanding, confidence and participation rates of women receiving these decision aids. In particular, the GDG considered qualitative research would be useful for this.
• Assess whether women are adequately prepared and aware while participating in studies concerning the use of decision aids (e.g. through informed consent). This could vary depending on the age group. The use of plain language could facilitate in translating recommendations in a more understandable manner.
• During the updating of this recommendation, additional data from randomised controlled trials was found and the GDG felt it is unlikely that the body of evidence coming from observational research would have increased the certainty of the evidence or changed the strength or direction of the recommendation.