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Published on: August 25, 2014
Long-term follow-up culture in state newborn screening programs
1Department of Health Policy and Management, School of Public Health, University at Albany, Rensselaer, New York, USA. thoff@albany.edu
Summary
Organizational culture significantly impacts long-term follow-up in state newborn screening programs. Understanding these cultural norms is crucial for effective long-term patient care and public health initiatives.
Area of Science:
- Public Health
- Healthcare Management
- Genetics
Background:
- Newborn screening programs are expanding in the US.
- Long-term follow-up is a growing area of focus for these programs.
Purpose of the Study:
- To examine how organizational culture influences the scope and substance of long-term follow-up in state newborn screening programs.
Main Methods:
- Qualitative interviews were conducted with representatives from 38 state newborn screening programs.
Main Results:
- Key cultural norms identified may hinder proactive long-term follow-up.
- These include prioritizing direct/specialist care over public health, focusing on short-term follow-up, and perceiving others as responsible for long-term care.
Conclusions:
- Understanding state newborn screening program culture is vital.
- Culture shapes the extent and nature of long-term follow-up, irrespective of resources.
