Long-term follow-up culture in state newborn screening programs

Abstract

Purpose: Long-term follow-up is an increasing focus as newborn screening expands in the United States. The present study informs this issue by examining the role played by organizational culture in shaping the scope and substance of long-term follow-up in state newborn screening programs. Methods: Qualitative interviews were conducted with 38 state newborn screening programs. Results: Several key cultural norms were identified within state newborn screening programs that may undermine proactive attempts to conduct long-term follow-up. These include (a) beliefs that place direct patient care and specialist care versus a public health orientation at the center of long-term follow-up; (b) an everyday emphasis on short-term follow-up that obscures the longer-term follow-up focus; and (c) the perception that others are engaged in long-term follow-up at the state level. Conclusions: The findings support the importance of understanding state newborn screening program culture and how that culture may shape the scope and substance of long-term follow-up in a given state, regardless of the level of staff and resources made available to conduct these activities. © 2008 American College of Medical Genetics.