PP72 Newborn bloodspot screening for cystic fibrosis: what do expectant women, new mothers and mothers of newly screen-detected cf know about the screened condition?

Abstract

Background Newborn bloodspot screening (NBS) for Cystic fibrosis (CF) was added to the NBS programme in Ireland in 2011. Research suggests that information provided to parents about NBS is unplanned, informal and mostly provided in the postnatal period and that inadequate information and preparation prior to screening can lead to increased shock and anxiety if screening results are positive. The aim of this study was to evaluate knowledge about CF among antenatal and early postnatal mothers and mothers of babies with recently screen-detected CF. Methods Study Part 1 : Cross-sectional study of 693 antenatal (≥36 weeks gestation) and 380 postnatal women (post NBS) recruited from three large maternity hospitals in Ireland. Women were asked to self-complete a questionnaire regarding NBS that included fourteen CF knowledge questions. Only those women that had heard of the CF were asked to complete the CF knowledge questions. Logistic regression was used to identify demographic and maternity factors associated with CF knowledge. Study Part 2 : As part of an ongoing study on CF in Ireland parents of children with a child diagnosed with CF through NBS completed a telephone questionnaire regarding awareness of CF when recalled post-NBS with a positive screening test. Recruitment is ongoing and 25 parents have been interviewed to-date. Results 543 (82.0%) antenatal and 334 (88.1%) postnatal women had heard of CF. Significantly more postnatal than antenatal women were aware that CF is included on the NBS (82.6% vs 63.1%; OR 0.36; 95% CI 0.66–0.49) and remembered receiving an information leaflet about NBS (35.9% vs 13.9%; OR 0.29; 95% CI 0.21–0.39). Significantly more antenatal than postnatal women were unsure/agreed that “there is a cure for CF” (36.5% vs 27.6%; OR 0.65; 95% CI 0.48–0.89). Over 90% of both antenatal and postnatal women believe there are health consequences to being a CF carrier. Native English speaker and higher educational status were independently associated with CF knowledge in antenatal women; lower educational status and lack of private health insurance were independently associated with poor knowledge in postnatal mothers. Of 25 mothers of children with screen-detected CF 56% were aware at the time of diagnosis that CF had been added to the NBS and 60% recalled receiving information about NBS either antenatal or postnatal, with the majority of information reported as provided in the postnatal period. Conclusion There are some misconceptions about CF and there is suboptimal awareness of the addition of CF to NBS, despite written informed consent from all mothers.