Rolling out NIPT
on 25 May 2018 Midwives Magazine England NIPT - Non-Invasive Prenatal Testing
An evaluative roll-out of non-invasive prenatal testing is due to start in England. Lindsay Kimm and Liane Powell explain what it entails.
Following government approval of the UK National Screening Committee’s (UK NSC) recommendation, an evaluative introduction of non-invasive prenatal testing (NIPT) for Down’s, Edwards’ and Patau’s syndromes to the NHS Fetal Anomaly Screening Programme (FASP) will take place from autumn 2018 in England. In Wales women have had access to the new test since April, while the Scottish Screening Committee is still considering NIPT as additional screening.
Introducing NIPT as an evaluative roll-out means that it can be monitored and reviewed on an ongoing basis and changes can be made quickly and effectively. The evaluation will take place over three years and aims to answer questions raised by the UK NSC including the impact NIPT has on decisions about screening; the testing for Edwards’ and Patau’s syndromes; how often ‘no result’ occurs from NIPT; and the time taken for women to receive results.
NIPT will be offered as an additional option for all pregnant women following a higher chance result (between one in two and one in 150) from first trimester combined or second trimester quadruple screening. It involves taking a blood test from the woman to assess the chance of the baby having Down’s, Edwards’ or Patau’s syndromes.
The testing will reduce the number of women who are offered an invasive diagnostic test, which carries a risk of miscarriage. The UK NSC review estimates that this could reduce the number of miscarriages related to the invasive test from 46 to approximately three per year.
NHS FASP worked with support organisations (see below), clinicians and scientists to develop balanced education and information for the public and health professionals.
Training and toolkit
The support groups played an important role in the delivery of eight regional training events, which were attended by over 400 identified NIPT ‘champions’ representing all NHS trusts in England that offer screening for Down’s, Edwards’ and Patau’s syndromes. NIPT champions are responsible for making sure all relevant colleagues in their trust complete a set programme of cascade training including midwives, community midwives, obstetricians, sonographers, and fetal medicine practitioners.
A toolkit has been developed to standardise the cascade training. All health professionals who are involved in offering screening should complete the essential elements of the training, which should take around 2.5 hours to complete. NIPT champions have said that where possible, they plan to take advantage of the cascade training opportunity to include recommended elements of the toolkit as well, which is estimated to take a further two hours.
The aim of the training is to help healthcare professionals support women in making personalised informed choices about screening. The toolkit includes films showing the lived experience of people with Down’s syndrome and parents’ experiences of Edwards’ syndrome; an interactive NHS FASP screening pathway; presentations from NHS FASP, support organisations and clinical advisors; and filmed scenarios on booking and counselling.
Screening and immunisation teams will monitor the compliance of provider trusts in delivering the training.
Support resources and activities
A new version of the booklet Screening tests for you and your baby has been developed to aid parents in making informed choices about their pregnancies and will be released to support the commencement of the roll-out. A leaflet providing information for women who receive a higher chance result from combined and quadruple screening is also being developed, and an NIPT e-learning module will be available via e-learning for healthcare by summer 2018, visit e-lfh.org.uk/nhs-screening-programmes
Lindsay Kimm is national education and training manager at NHS Screening Programmes and Liane Powell is project lead at NHS FASP
Links to partner support organisations
Antenatal Results and Choices: arc-uk.org
Down’s Syndrome Association: downs-syndrome.org.uk
Down Syndrome Research Foundation: dsrf-uk.org
Support Organistion for Trisomy 13/18 UK: soft.org.uk