Factors Influencing Parental Awareness about Newborn Screening.

Věra Franková,Viktor Kožich,Alena Dohnalová,Karolína Pešková,Riona O’Driscoll,Pavel Ješina,Renata Hermánková

doi:10.3390/ijns5030035

Abstract

Appropriate and timely education about newborn screening (NBS) helps to foster benefits such as prompt follow up, to promote parents’ autonomy via informed consent and minimize the harms such as reducing the impact of NBS false-positive results. The aim of this study was to ascertain how mothers are informed about NBS in the Czech Republic and to identify the variables associated with awareness about NBS. The questionnaires evaluating awareness and its determinants were mailed to a random sample of 3000 mothers 3 months post-delivery. The overall response rate was 42%. We analysed 1100 questionnaires and observed that better awareness about NBS was significantly associated with age, parity, number of information sources, child health status, size of maternity hospital and an obstetrician as the source of prenatally obtained information. Although the majority of mothers (77%) in our study recalled being informed by a physician or nurse in the neonatal ward, results have revealed that over 40% of participants did not have sufficient awareness about the principal aspects of NBS. Several measures including seminars for healthcare providers and the development and distribution of new educational materials were adopted to improve parental education about NBS in the Czech Republic.

Highlights

Newborn screening (NBS) is a preventive public health programme carried out globally
Reports are not issued on screen negative results parents should be made aware they will not be informed personally of results. The aim of this survey study was to map how mothers are informed about NBS in the Czech Republic
This study is the first attempt to ascertain how mothers are informed about NBS in the Czech Republic and to identify the variables associated with NBS awareness, which may serve as the starting point for future improvements

Summary

Introduction

Newborn screening (NBS) is a preventive public health programme carried out globally. The aim is to identify infants with increased risk of certain rare disorders and to provide them with early treatment and other interventions which can prevent serious damage to their health. These benefits can only be achieved with prompt follow up to confirm or refute a presumptive diagnosis after an initial positive result. In order for this to happen parents need to be informed about the nature of NBS and its purpose. Parental education about NBS and consent for screening should be an integral part of the NBS programme

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