This PhD study is looking at prevention of neural tube defects (NTD), severe congenital abnormalities caused by failed closure of the embryonic neural tube, within different ethnic communities in the UK. This involves calculating accurate NTD prevalence estimates and setting these estimates in context by exploring the NTD epidemiology. The knowledge, attitudes and health behaviour, particularly with regards to folic acid use, of women from these communities are also being explored through semi-structured interviews.
A mixed methods methodology is used for this study. For the quantitative component, data from congenital anomaly registers, supplemented with termination data from the Department of Health (DH), are being used to explore the NTD epidemiology and whether the NTD prevalence is higher in different ethnic communities; the natural history of NTD affected pregnancies within these communities are also being mapped. For the qualitative study, semi-structured interviews are being conducted with women from ethnic communities about their pre-pregnancy knowledge, attitudes and health behaviours.
The research is being conducted to increase understanding of NTD epidemiology and pre-pregnancy views and practices within ethnic communities in the UK and identify where prevention efforts need to be targeted.
Primary expected outcomes
Quantitative study – Association between NTD prevalence and ethnicity and whether NTD affected pregnancy is terminated or not and ethnicity (univariable analyses); NTD prevalence/ethnicity and termination or not/ethnicity associations adjusted for any maternal or infant factors (multivariable analyses). Qualitative study – Association between pre-pregnancy knowledge, attitudes and health behaviour and pregnancy outcomes.
Survival analysis of NTD affected pregnancies by ethnicity
Quantitative study – All NTD affected pregnancies to mothers aged 16 and over from 5 UK congenital anomaly registers between the years 2006 and 2011 inclusive; termination data for the same years and geographical area.
Qualitative study – Study advertised through the Spina Bifida, Hydrocephalus, Information, Networking, Equality (SHINE) Association; Great Ormond Street Hospital and community organisations.
Grand Challenges studentship
For further information please contact: firstname.lastname@example.org
Knowledge and periconceptional use of folic acid for the prevention of neural tube defects in ethnic communities in the United Kingdom: Systematic review and meta-analysis.
Jordana N. Peake, Andrew J. Copp and Jill Shawe
Article first published online: 19 JUL 2013 DOI: 10.1002/bdra.23154