Informed decision-making in prenatal screening for Down's syndrome: what knowledge is relevant?

Area of Science:

• Medical Genetics
• Public Health
• Health Communication

Background:

• Informed decision-making regarding prenatal screening for Down's syndrome (DS) is crucial.
• Effective program evaluations require standardized measures of patient knowledge.
• Existing knowledge assessments may not capture all decision-relevant aspects of DS screening.

Purpose of the Study:

• To identify essential knowledge components for informed decisions on prenatal screening for Down's syndrome.
• To develop a reliable knowledge questionnaire for large-scale program evaluations of prenatal screening.

Main Methods:

• Literature review to identify knowledge domains related to screening.
• Development of specific knowledge items based on identified domains.
• Expert consensus (professionals and pregnant women) to validate domains and items for decision relevance.

Main Results:

• All knowledge domains were deemed important by experts.
• Key information includes understanding test results (increased probability), screening aims, and the voluntary nature of the test.
• Less critical, but with high consensus, were details about the condition, prevalence, and screening procedures.

Conclusions:

• A validated knowledge measure for prenatal screening for Down's syndrome has been developed.
• This tool facilitates routine, large-scale evaluations of information delivery in prenatal DS screening programs.