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APHA Scientific Session and Event Listing

Timothy Hoff, PhD and Maria Ayoob, MPH. School of Public Health, Dept. of Health Policy and Management, University at Albany, SUNY, Room 181, GEC Building, 1 University Place, Rensselaer, NY 12144, 518-402-6512, thoff@albany.edu

Exploring Barriers to Long-Term Follow-Up

In Newborn Screening Programs

Abstract

Purpose: To inform current policy debate regarding the public health role in long-term follow-up (LTFU) for individuals with disorders identified through state newborn testing efforts, by identifying and assessing key challenges, quality assurance activities, and LTFU perceptions of state newborn screening programs.

Methods: A 23 question, web-based survey sent to newborn screening (NBS) programs in all 50 states and D.C. during January and February 2005.

Results: Survey findings reveal significant variation in terms of how LTFU is defined, staffed, and carried out within state newborn screening programs. Many U.S. NBS programs do not currently engage in structured LTFU for newborns with diagnosed disorders. The NBS programs that do face various challenges that may impact their ability to perform LTFU effectively. Barriers include a lack of comprehensive quality assurance practices, outsourcing, financial constraints, and perceived communication problems with providers who treat these patients.

Conclusions: A more in-depth analysis of the desired and feasible roles that should be played by NBS programs in LTFU is needed. The wide variability within NBS programs regarding the structure and implementation of LTFU, and the relative absence of LTFU systems components in some NBS programs, poses an interesting question regarding responsibility for evaluation of longer-term outcomes associated with newborn testing and disorder diagnosis.

Learning Objectives: At the conclusion of the session, the participant in this session will be able to

• Define the current state of long-term follow-up (LTFU) activities nationally in state newborn screening programs;
• Recognize the scope and substance of various financial, staffing, cultural and quality assurance barriers to effective LTFU in states;
• Identify an agenda for research and public health policy related to decreasing barriers to LTFU in state newborn screening programs; and
• Assess the relative importance of challenges undermining effective LTFU in state newborn screening programs

Keywords: Genetics, Quality Assurance

Presenting author's disclosure statement:

Not Answered