Neonatal screening: educating parents and health professionals to improve children's health
12 December 2014
Research helped the NHS maximize the number of UK babies screened for a range of serious but treatable conditions when they are about a week old enabling them to start treatment quickly.
Midwives collect blood spots from the heels of almost all newborn babies in the UK to establish whether they have an inherited health condition. As prompt treatment can often prevent disability or even death, it is essential to learn as much as possible about the best ways of informing, and consulting, parents about the tests and their results. It is also vital that healthcare staff are expertly trained in best-practice approaches.
The UK's national neonatal screening programme and its surrounding ethical issues have evolved dramatically since its establishment in 1969. In recent years there has been a growing culture of transparency and informed consent.
In 2002, the Department of Health commissioned the UK Newborn Screening Programme Centre (a collaboration between Great Ormond Street Hospital for Children NHS Trust, the UCL Institute of Child Health and the UCL Institute of Education) to develop, implement and maintain a high quality screening programme for all newborn babies.
The UCL IOE research team, led by Professor Sandy Oliver, conducted reviews of international research into communication about newborn screening and then wrote their own information leaflets in collaboration with parents and healthcare professionals. They also produced a handbook and training materials for midwives and convened an advisory group to develop guidelines on communicating with parents.
The parents' leaflets and information for health professionals were distributed through regional antenatal and child health screening co-ordinators, public health directors, heads of midwifery, health visitors, laboratory directors and child health record departments. Researchers contributed to CPD for health professionals around the country.
Having the leaflets makes it much easier for the midwives to discuss screening and for parents to understand the information about the range of conditions tested, the procedure itself and the risks and benefits - Supervisor of Midwives, East Kent Hospitals University NHS Foundation Trust
Before 2005, parents were not provided with impartial information on newborn screening. By 2011-12, largely because of the UCL IOE team's work, clear, unbiased information was available to the parents of the 810,000 babies screened for five inherited conditions, and the 1,481 who needed further diagnostic tests. As the researchers recommended, parents can now discuss blood spot screening with midwives during pregnancy and immediately before the test. This enables them to make an informed choice. At the time of the test, midwives explain the research and public health uses of blood spots. It had been feared that if parents were told that screening could have disadvantages as well as advantages, many more would choose not to have their baby screened. However, this has not happened. Screening was declined by the parents of only 6 in 10,000 newborns.
The research has contributed to a year-on-year improvement in timely sample collection in most areas of the UK. The proportion of children screened at between 5 and 8 days now ranges from 96% in Wales to 98% in Scotland and Northern Ireland. In England, the rate rose from 91% to 97% between 2006-7 and 2011-12. Blood spot cards are now dispatched more quickly, with the number reaching laboratories late falling from 14% to 4%. The resources have also been referred to internationally.
Case study on the impacts of UCL IOE research on neonatal blood spot screening [PDF]