NEPTUNE: Non-InvasivE Prenatal Testing Wales: UNdErstanding and Improving the New Landscape of Prenatal Screening
End of project summary
Main messages
In April 2018, NHS Wales became the first UK public health system to introduce Non-Invasive Prenatal Testing (NIPT) into routine pregnancy care. NIPT is a highly accurate test for detecting Down’s, Edwards’, and Patau’s syndromes early in pregnancy, offering a safe alternative to invasive tests. Used as an additional step in screening and not a replacement for existing tests, its introduction raises various clinical, social, and ethical challenges. Little is known about exactly how NIPT is used and understood by women or healthcare providers in Wales. To better understand the impact of NIPT, the NEPTUNE study was conducted across five NHS sites in Wales. It gathered comprehensive insights from service users, providers, and experts, to help identify areas of best practice and possible service improvement.
Key findings and implications
Participants valued NIPT’s introduction into routine care, with many suggesting screening could be improved by offering the test to more or all women. Issues and challenges were also reported however: many women experienced anxiety in connection with NIPT and screening, found time spent waiting for results difficult and distressing, and felt unclear and ‘overloaded’ by the amount and type of information provided alongside. Though most found NIPT reassuring, for some women results did not relieve anxieties and remained a source of confusion and concern. Private patients appreciated being able to access NIPT directly, and although they trusted and valued test results, the quality of information and support provided varied significantly. Clinical staff valued NIPT’s accuracy and risk-free nature, and supported its use as a test for all in principle, though were aware of potential problems around accuracy. All participants highlighted the importance of ensuring equal access to high quality testing, information, and support, and suggested that improving staff knowledge and training on NIPT was a key concern. The need to improve specialist support and extend this to all women in Wales was also highlighted. The work of integrating NIPT into routine care is, as previous work suggests, complex and requires ongoing development and refinement to meet the needs of both women and healthcare providers.