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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Exploring barriers to long-term follow-up in newborn screening programs.
Timothy Hoff1, Adrienne Hoyt, Brad Therrell
1Department of Health Policy, Management, and Behavior, School of Public Health, State University of New York at Albany, 1 University Place, Rensselaer, NY 12144, USA.
Summary
Many newborn screening programs lack structured long-term follow-up for diagnosed disorders. Challenges include quality assurance gaps, funding, and communication issues, impacting effective patient care.
Area of Science:
- Public Health
- Genetics
- Pediatrics
Background:
- Newborn screening programs identify infants with heritable or congenital disorders.
- Long-term follow-up (LTFU) is crucial for managing diagnosed conditions and evaluating screening effectiveness.
- Current LTFU practices and challenges within state newborn screening programs are not well-defined.
Purpose of the Study:
- To assess the current state of long-term follow-up (LTFU) for disorders identified by newborn screening (NBS).
- To identify key challenges, quality assurance (QA) activities, and perceptions of LTFU among NBS programs.
- To inform policy discussions on the public health role in NBS LTFU.
Main Methods:
- A web-based survey was administered to newborn screening programs in all 50 states and Washington, DC.
- The survey, comprising 23 questions, was conducted in January and February 2005.
- Data collected focused on current LTFU practices, challenges, and QA measures.
Main Results:
- A significant number of U.S. NBS programs do not have structured LTFU for diagnosed conditions.
- Programs engaged in LTFU face challenges including inadequate QA, outsourcing, financial limitations, and provider communication issues.
- These barriers potentially hinder the effectiveness of LTFU services.
Conclusions:
- Further analysis is required to define the optimal and feasible roles of NBS programs in LTFU.
- Variability in LTFU structure and implementation raises questions about accountability for long-term outcome evaluation.
- The findings highlight a need for clearer guidelines and support for NBS programs regarding long-term patient care.
