Newborn bloodspot screening for cystic fibrosis: What do antenatal and postnatal women know about cystic fibrosis?

C Fitzgerald; B Linnane; E Heery; N Conneally; S George; P Fitzpatrick

doi:10.1016/j.jcf.2015.11.014

Newborn bloodspot screening for cystic fibrosis: What do antenatal and postnatal women know about cystic fibrosis?

J Cyst Fibros. 2016 Jul;15(4):436-42. doi: 10.1016/j.jcf.2015.11.014. Epub 2015 Dec 18.

Authors

C Fitzgerald¹, B Linnane², E Heery³, N Conneally³, S George³, P Fitzpatrick³

Affiliations

¹ School of Public Health, Physiotherapy and Sports Science, University College Dublin, Ireland. Electronic address: catherine.fitzgerald.2@ucdconnect.ie.
² Department of Paediatrics, University Hospital Limerick, Ireland; Graduate Entry Medical School and Centre for Interventions in Infection, Inflammation & Immunity (4i), University of Limerick, Limerick, Ireland.
³ School of Public Health, Physiotherapy and Sports Science, University College Dublin, Ireland.

PMID: 26708264
DOI: 10.1016/j.jcf.2015.11.014

Abstract

Background: The Republic of Ireland has one of the highest reported incidences of cystic fibrosis (CF) in the world (1/1353) with an estimated carrier rate of 1/20. No cure exists, however there have been significant advances in available treatments. Newborn bloodspot screening (NBS) for CF was added to the NBS programme in Ireland in July 2011. Little is known about antenatal or postnatal women's knowledge about CF.

Methods: This was a cross-sectional study of 662 antenatal (≥36weeks gestation) and 480 postnatal women (post NBS). Women were asked to self-complete a questionnaire including 14 CF knowledge questions.

Results: Among the respondents significantly more postnatal than antenatal women were aware that CF is included on the NBS (81.8% vs 63.5%; p<0.001). 92.7% believe that there are health consequences to being a carrier and 33.6% believe there is a cure for CF. In the multivariate analysis, lower educational status (OR 2.13; 95% CI 1.31, 3.46) being an antenatal mother (OR 1.51; 95% CI 1.04, 2.18), having no family history of CF (OR 5.82; 95% CI 1.62, 20.90) were associated with poor CF knowledge, while increasing age was found to be protective against poor CF knowledge (OR 0.96; 95% CI 0.92, 0.99).

Conclusions: Results from this study provide a useful insight into women's preexisting knowledge about CF, which could be used to inform initial discussions with parents about their child's diagnosis.

Keywords: Cystic fibrosis; Maternal knowledge; Newborn bloodspot screening.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Cross-Sectional Studies
Cystic Fibrosis Transmembrane Conductance Regulator / genetics*
Cystic Fibrosis* / diagnosis
Cystic Fibrosis* / epidemiology
Cystic Fibrosis* / genetics
Cystic Fibrosis* / psychology
Educational Status
Female
Genetic Testing / methods
Health Knowledge, Attitudes, Practice
Health Literacy* / methods
Health Literacy* / statistics & numerical data
Humans
Infant, Newborn
Ireland / epidemiology
Medical History Taking
Needs Assessment
Neonatal Screening* / methods
Neonatal Screening* / psychology
Perinatal Care* / methods
Perinatal Care* / organization & administration
Pregnancy
Surveys and Questionnaires

Substances

Cystic Fibrosis Transmembrane Conductance Regulator