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Parental awareness of newborn bloodspot screening in Ireland

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Abstract

Background

There is little known regarding how familiar parents are with the newborn bloodspot screening (NBS) test or how well parents of a child with a screen-detected condition understand that condition initially.

Aim

The study aim was to examine parental NBS awareness and conditions screened.

Methods

Two studies were conducted: [1] Parents of children with cystic fibrosis (CF) detected via NBS and subsequently, diagnosed (n = 124) completed a telephone questionnaire regarding information they received at the time of NBS. [2] A cross-sectional study of women (n = 662 (58%) antenatal; n = 480 (42%) postnatal) attending three large maternity hospitals completed a questionnaire addressing NBS awareness.

Results

Mothers incorrectly identified diabetes/asthma (35% postnatal; 70% antenatal) and sickle cell disease (26%) as conditions on NBS in Ireland. Phenylketonuria was correctly identified by 48/26%, CF by 82/64%, and congenital hypothyroidism by 35/13% postnatal and antenatal women respectively. Of parents of children screen-detected and subsequently, diagnosed with CF, only half (n = 63; 51%) reported awareness at the time of NBS that CF was included. These results should be used to improve the information provided to expectant mothers and to inform health professionals’ initial discussions with parents about their child’s diagnosis, building on parents’ pre-existing knowledge.

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References

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Acknowledgements

The authors acknowledge the Health Research Board.

Funding

This study was funded by the Health Research Board (grant number HRA-2013-PHR-311).

Author information

Authors and Affiliations

  1. School of Public Health, Physiotherapy & Sports Science, University College Dublin, Dublin, Ireland

    Patricia Fitzpatrick, Catherine Fitzgerald & Rebecca Somerville

  2. Graduate Entry Medical School and Centre for Interventions in Infection, Inflammation & Immunity (4i), University of Limerick, Limerick, Ireland

    Barry Linnane

  3. National Children’s Research Centre, Crumlin, Dublin, Ireland

    Barry Linnane

Authors
  1. Patricia Fitzpatrick
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  2. Catherine Fitzgerald
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  3. Rebecca Somerville
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  4. Barry Linnane
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Corresponding author

Correspondence to Patricia Fitzpatrick.

Ethics declarations

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Conflict of interest

Patricia Fitzpatrick declares that she has no conflict of interest. Catherine Fitzgerald declares that she has no conflict of interest. Rebecca Somerville declares that she has no conflict of interest. Barry Linnane declares that he has no conflict of interest.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Fitzpatrick, P., Fitzgerald, C., Somerville, R. et al. Parental awareness of newborn bloodspot screening in Ireland. Ir J Med Sci 188, 921–923 (2019). https://doi.org/10.1007/s11845-018-1949-0

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  • DOI: https://doi.org/10.1007/s11845-018-1949-0

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