373 - Provider Perspectives on Genomic Care in Safety-Net Neonatal Intensive Care Units

Poster Number: 373
Publication Number: 373.3159

Background: Many genetic disorders present in the neonatal period, and rapid genomic sequencing (rGS) has high diagnostic and clinical utility in this population. However, critically ill infants from marginalized populations disproportionately receive care in settings lacking access to state-of-the-art genomic care, leading to inequitable outcomes. The experiences of providers working in safety-net neonatal intensive care units (NICUs) that lack access to state-of-the-art genomic care is unknown.

Objective: To understand the perspectives of neonatal and genetics providers in safety-net NICUs, and to identify barriers and facilitators to provision of high quality genomic care, with the ultimate goal of informing development of an implementation study (“virtual genome network”, VIGOR) providing rGS within these settings.

Design/Methods: We conducted semi-structured focus group interviews with neonatologists, nurse practitioners, and geneticists at five safety-net US NICUs. Our analysis was guided by the Promoting Action on Research Implementation in Health Services framework, which posits that successful implementation is based on three domains: evidence, context, and facilitation. We iteratively developed codes and themes until thematic saturation was reached.

Results: We summarize our themes and subthemes in Table 1. Regarding evidence, providers felt that genetic testing can improve infant health outcomes and enable decision-making by families. Regarding context, the major barriers identified by providers to the provision of high-quality genomic care were cost of genetic testing, lack of genetics expertise to disclose results and follow-up with families, and complexity of selecting and ordering genetic tests. Providers felt that the current status quo was suboptimal for infants and families and were dissatisfied, annoyed, and frustrated. Providers also felt that the inequity in provision of genomic care across NICUs was an injustice. Regarding facilitation, providers felt that VIGOR would address cost and turnaround time barriers, address the need to improve genetics expertise and training, and foster family-centered care and collaboration.

Conclusion(s): Providers in safety-net NICUs believe that access to state-of-the-art genomic care is crucial for optimizing health outcomes for critically ill infants and their families, yet substantial barriers including cost and lack of genetics expertise prevent this. Providers agreed that provision of rGS within safety-net NICUs as part of the planned VIGOR study would be highly beneficial.