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Expanded newborn screening in Puerto Rico and the US Virgin Islands: education and barriers assessment
Ana Morales1, Andrea Wierenga, Carla Cuthbert
1Cardiovascular Division, Miller School of Medicine, University of Miami, 1120 NW 14th Street, Miami, FL 33136, USA. amorales4@med.miami.edu
Insights
Implementing expanded newborn screening in Puerto Rico and the US Virgin Islands faces educational and resource barriers. Targeted in-service training improved professional knowledge, laying groundwork for policy development.
Area of Science:
- Public Health
- Genetics
- Medical Education
Background:
- Expanded newborn screening (ENBS) implementation in US territories lags behind the mainland.
- Educational and resource barriers hinder ENBS adoption in Puerto Rico and the US Virgin Islands.
- A significant gap exists between the US mainland and these territories regarding ENBS capabilities.
Purpose of the Study:
- Assess the current status of ENBS implementation in Puerto Rico and the US Virgin Islands.
- Identify specific needs and barriers encountered by local newborn screening professionals.
- Evaluate the effectiveness of an educational intervention designed to address immediate needs.
Main Methods:
- Conducted in-service training sessions for newborn screening professionals in the territories.
- Measured intervention efficacy using pre- and posttest scores and seminar evaluations.
- Assessed local needs and barriers, focusing on human resources, intervention, language, social issues, education, and communication.
Main Results:
- Demonstrated statistically significant improvement (P < 0.05) in knowledge scores post-intervention.
- Documented specific needs and barriers related to ENBS implementation in Puerto Rico and the US Virgin Islands.
- Highlighted differences in challenges faced by each territory.
Conclusions:
- Puerto Rico and the US Virgin Islands encounter distinct obstacles in implementing expanded newborn screening.
- The study provides foundational data for developing public policy and sustained educational initiatives.
- Addressing identified barriers is crucial for equitable expansion of newborn screening services.
Purpose:
The implementation of the expanded newborn screening panel of 29 disorders recommended by the American College of Medical Genetics in Puerto Rico and United States Virgin Islands is still in development or in early stages. Efforts in the territories are complicated by educational and resource barriers that generate a wide gap between the islands and the US mainland.
Methods:
To meet immediate educational needs, we conducted in-services for local newborn screening professionals. The efficacy of the educational intervention was measured by pre and posttest scores and a seminar evaluation. An assessment was obtained to document local newborn screening needs and barriers, with focus on human resources, intervention, language, social issues, education, and communication.
Results:
Statistical significance was found (P value < or =0.05) between pre and posttest scores of the educational intervention. Needs and barriers associated with expanded newborn screening were also documented.
Conclusion:
Puerto Rico and United States Virgin Islands face different challenges in their implementation of expanded newborn screening. The data obtained in the present study serves as foundation for the development of public policy and long-term educational programs.
