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Authors

  1. Simon, Norma-Jean MPH, MPA
  2. Atkins, Anne MPH
  3. Yusuf, Careema MPH
  4. Tarini, Beth A. MD, MS

Abstract

Context: In 2015, the United States Federal Advisory Committee on Heritable Disorders in Newborns and Children issued recommendations for state-based newborn screening programs to benchmark improvements in newborn-screening timeliness. Newborn screening (NBS) timeliness encompasses the efficient collection, transportation, testing, and reporting of results. Nearly all state programs fail to achieve recommended timeliness benchmarks.

 

Objectives: Our study explored the processes and procedures that accelerate or hamper progress toward improving NBS timeliness from a public health laboratory program perspective.

 

Design: We conducted semistructured interviews to elicit public health laboratory perspectives on NBS specimen delivery, laboratory testing and processing, communication of results to birthing providers, program staffing, and quality measures and data sharing. A content analysis explored practices, processes, and procedures related to NBS timeliness. A secondary analysis examined interorganizational strategies to enhance timeliness outcomes among NBS stakeholders.

 

Participants: Ten laboratories participated in the study (n = 21 personnel). Participants included public health laboratory directors, NBS program managers, and NBS follow-up program staff.

 

Results: Efforts to improve NBS timeliness included engaging birthing providers, expanding courier services, extending operating hours, modifying staffing schedules, and implementing cross-training schedules to facilitate prompt collection, transport, and processing of NBS specimens. Sustained improvements will require implementing robust data systems, integrating laboratory and follow-up processes, and improving communication among all NBS stakeholders. Programs expressed a desire to refine timeliness metric definitions to ensure useful comparisons across states.

 

Conclusions: Efforts to improve timeliness have accelerated in recent years; sustained progress will require increased coordination and integration among stakeholders in the NBS delivery system.