Newborn screening information supports public health more than informed choice

Abstract

Objective To appraise information resources on newborn blood spot screening currently available for parents and health professionals internationally. Method Health information on newborn blood spot screening was sourced internationally through the internet and, in the United Kingdom, through health service providers and support organisations. An appraisal tool was developed based on DISCERN criteria for evaluating information about patient treatment choices and UK National Screening Committee criteria for determining whether a screening programme should be implemented. Two researchers independently applied the appraisal tool to all the leaflets describing the heel prick, then discussed and resolved discrepancies. Results The majority of leaflets supported the public health agenda by informing parents of the benefits of screening, including the significance of early detection and treatment for these conditions. Few leaflets, however, supported the informed choice agenda by mentioning either the limitations of screening, or choice, or by being easy to read. Conclusion Most health information about newborn blood spot screening portrays it in a positive light, and relatively few leaflets address the difficulties openly. We recommend the use of criteria for high-quality patient information alongside topic or condition-specific guidelines as a starting point for developing patient information.