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Informing Parents about Newborn Screening: A European Comparison Study.

Amber IJzebrink¹, Tessa van Dijk¹, Věra Franková^2,3

¹Department of Clinical Genetics, Section Community Genetics, Amsterdam University Medical Center, Vrije Universiteit Amsterdam, 1007 MB Amsterdam, The Netherlands.

International Journal of Neonatal Screening

|March 3, 2021

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Informed decisions about newborn screening (NBS) depend on parental knowledge. European countries vary in how they present NBS information, impacting parental understanding and participation.

Area of Science:

Public Health
Genetics
Parental Education

Background:

Parental knowledge is crucial for informed decisions regarding newborn screening (NBS).
European countries exhibit diverse approaches to informing parents about NBS programs.
Variations in information content may influence parental understanding and participation.

Purpose of the Study:

To assess knowledge aspects within European parental information products for newborn screening (NBS).
To compare the content of 26 European NBS information products against established scientific knowledge criteria.
To identify areas for improvement in NBS information dissemination to parents.

Main Methods:

Content analysis of 26 European parental information products for newborn screening (NBS).

Keywords:

European information products informed decision knowledge aspects newborn screening (NBS)parental information

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Comparison of information content against a checklist of eight key knowledge aspects derived from scientific literature.

Identification of additional relevant knowledge aspects not covered in existing materials.

Main Results:

Most European NBS information products include the majority of the eight essential knowledge aspects.
Significant variations exist between countries regarding the detail and phrasing of NBS information.
Additional knowledge aspects, such as residual bloodspot sample handling, were identified as important.

Conclusions:

While core knowledge aspects are generally covered, disparities in NBS information exist across Europe.
Optimizing parental information products requires addressing identified knowledge gaps and considering additional relevant aspects.
Further research is needed on the effectiveness of various communication methods and parental preferences for information delivery.