Evaluation of patient information leaflets for non-invasive prenatal testing for Down's syndrome

Abstract

Aims To validate an evidence-based patient information leaffet (PIL) to support women considering non-invasive prenatal testing (NIPT) for Down's syndrome. Methods A PIL was developed based on qualitative interviews and expert review. The PIL was evaluated by women offered NIPT for Down's syndrome as part of a research study. Questionnaires assessed usefulness, relevance, technicality and scope on a four point Likert scale. Qualitative interviews allowed a more in-depth exploration of views on the PIL. Findings The PIL was well received by women. Overall, they found it clear and easy to understand. Some women suggested the word heavy PIL could be enhanced through the addition of pictures, colour and altered line spacing. Conclusions The majority of women found the PIL useful when considering NIPT for Down's syndrome. The validated PIL could inform development of information resources for women during the future introduction of NIPT into the NHS Fetal Anomaly Screening Programme in the UK.