Parental awareness of newborn bloodspot screening in Ireland
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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.
The study aim was to examine parental NBS awareness and conditions screened.
Two studies were conducted:  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.  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.
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.
KeywordsAwareness Cystic fibrosis Newborn screening
The authors acknowledge the Health Research Board.
This study was funded by the Health Research Board (grant number HRA-2013-PHR-311).
Compliance with ethical standards
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 was obtained from all individual participants included in the study.
- 1.Araia MH, Wilson BJ (2012) Chakraborty P et al. Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers. Genet Med 14:963–970Google Scholar
- 7.National Newborn Bloodspot Screening Laboratory (2011) A practical guide to newborn bloodspot screening in Ireland. Health Service Executive 6th Edition – May 2016, DublinGoogle Scholar