Communication of Screen-Positive Newborn Bloodspot Screening Results for Metabolic Conditions in Ireland–Parent and Healthcare Professional Experience: A Service Evaluation

Communication of screen-positive newborn bloodspot screening (NBS) results is inherently challenging for both parents and HCPs. There is no internationally accepted gold-standard model, with heterogeneity in practice and with many jurisdictions reporting suboptimal parent and HCP experience. This service evaluation aimed to assess the model for communication of initial screen positive results for metabolic conditions through the Irish National Newborn Bloodspot Screening Programme (NNBSP). Under the current model, screen-positive results are communicated to parents by a healthcare professional (HCP) (usually over the phone) and follow-up is arranged through the maternity hospital of birth. The evaluation required engagement with three cohorts, comprising two parent cohorts (a True Positive (TP) cohort and a False Positive (FP) cohort) and one HCP cohort. A separate survey was designed for each cohort, informed by a review of the international literature and subject matter expertise. Overall, our evaluation found that the current model for communication of screen-positive results is acceptable to HCPs, the majority of whom regard communicating these results as an appropriate part of their role (61%) and feel confident doing so (68%). However, many parents reported that they did not receive key information, and 70% wanted more information at this first communication. Parents wanted clear, reassuring, and actionable information, including details of the suspected condition, next steps, and where to seek further support. HCPs wanted additional resources to support communication of screen-positive results, including guidelines, expert contacts, condition-specific information resources, and checklists. The findings of this evaluation will inform revisions of the current model, aimed at ensuring a better experience for parents and HCPs.