Exploring barriers to long-term follow-up in newborn screening programs.

Abstract

To inform current policy debate regarding the public health role in long-term follow-up for individuals with disorders identified through state newborn testing efforts, by identifying and assessing key challenges, quality assurance activities, and long-term follow-up perceptions of state newborn screening programs. A 23-question, web-based survey sent to newborn screening programs in all 50 states and Washington, DC, during January and February, 2005. Many U.S. newborn screening programs do not currently engage in structured long-term follow-up for newborns with diagnosed disorders. The newborn screening programs that do long-term follow-up face various challenges that may impact their ability to perform it effectively. Barriers include a lack of comprehensive quality assurance practices, outsourcing, financial constraints, and perceived communication problems with providers who treat these patients. A more in-depth analysis of the desired and feasible roles that should be played by newborn screening programs in long-term follow-up is needed. The wide variability within programs regarding the structure and implementation of long-term follow-up, and the relative absence of long-term follow-up systems components in some newborn screening programs, poses an interesting question regarding responsibility for evaluation of longer-term outcomes associated with newborn testing and disorder diagnosis.