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Parental awareness of newborn bloodspot screening in Ireland

Patricia Fitzpatrick1, Catherine Fitzgerald2, Rebecca Somerville2

  • 1School of Public Health, Physiotherapy & Sports Science, University College Dublin, Dublin, Ireland. patricia.fitzpatrick@ucd.ie.

Irish Journal of Medical Science
|December 17, 2018
PubMed

Insights

Parental awareness of newborn bloodspot screening (NBS) and screened conditions is limited. Many mothers incorrectly identified conditions like diabetes and sickle cell disease, highlighting a need for improved patient education.

Area of Science:

  • Medical Genetics
  • Public Health
  • Pediatrics

Background:

  • Limited understanding exists regarding parental familiarity with newborn bloodspot screening (NBS) and their comprehension of screen-detected conditions.
  • Assessing parental awareness is crucial for effective communication and informed decision-making in newborn screening programs.

Purpose of the Study:

  • To evaluate parental awareness of the newborn bloodspot screening (NBS) test.
  • To assess parental knowledge of specific conditions included in NBS panels.

Main Methods:

  • Two studies were conducted: a telephone questionnaire with parents of children diagnosed with cystic fibrosis (CF) (n=124) and a cross-sectional survey of antenatal and postnatal women (n=1142) regarding NBS awareness.
  • Data collection involved questionnaires assessing knowledge of NBS and specific screened conditions.

Main Results:

  • A significant proportion of mothers incorrectly identified conditions such as diabetes/asthma and sickle cell disease as part of NBS.
  • Awareness of specific conditions varied, with phenylketonuria (PKU) correctly identified by 48% (postnatal) and 26% (antenatal), and CF by 82% (postnatal) and 64% (antenatal).
  • Only 51% of parents whose children were diagnosed with CF after NBS were aware that CF was included in the screening panel at the time of the test.

Conclusions:

  • Current parental awareness of NBS and its screened conditions is insufficient, necessitating improvements in health information delivery.
  • Enhanced communication strategies are required for healthcare professionals to effectively discuss NBS and screen-detected diagnoses with parents.
  • Improving parental understanding of NBS can support better engagement and informed consent processes.
Abstract

Keywords:
AwarenessCystic fibrosisNewborn screening

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