RESUMEN
OBJECTIVE: To identify necessary components of a successful cystic fibrosis (CF) newborn screening (NBS) program. STUDY DESIGN: The approach to CF NBS used by the Massachusetts NBS program was examined. RESULTS: Several key components were identified that should be addressed when a state has made the decision to screen, and well in advance of actual implementation. These components include (1) inclusion of CF center directors in the development process; (2) logistics of choosing a screening algorithm relative to practices in place and community wishes; (3) projections of medical service needs from specific algorithms; (4) identification of critical reporting components; (5) identification of critical follow-up components; and (6) recognition of educational needs. CONCLUSIONS: Careful examination of a wide variety of issues is needed to ensure optimal implementation of NBS for CF.
Asunto(s)
Fibrosis Quística/diagnóstico , Evaluación de Necesidades/organización & administración , Tamizaje Neonatal/organización & administración , Desarrollo de Programa/métodos , Cuidados Posteriores/organización & administración , Algoritmos , Actitud del Personal de Salud , Actitud Frente a la Salud , Toma de Decisiones en la Organización , Asesoramiento Genético/organización & administración , Conocimientos, Actitudes y Práctica en Salud , Humanos , Recién Nacido , Massachusetts , Modelos Organizacionales , Tamizaje Neonatal/psicología , Evaluación de Resultado en la Atención de Salud/organización & administración , Padres/educación , Padres/psicología , Ejecutivos Médicos/educación , Ejecutivos Médicos/organización & administración , Atención Primaria de Salud/organización & administración , Evaluación de Programas y Proyectos de Salud/métodos , Sensibilidad y Especificidad , Apoyo SocialRESUMEN
OBJECTIVE: To evaluate compliance with recommendations for sweat testing/specialty evaluation and genetic counseling after a positive cystic fibrosis newborn screening (CF NBS) result. STUDY DESIGN: All infants with positive CF NBS results require a diagnostic sweat test at a CF center. Results that were "screen positive and diagnosis negative" prompted family genetic counseling. Parent compliance with follow-up protocol recommendations was retrospectively analyzed relative to the communications model in place at a particular CF Center. RESULTS: At each of the 5 MA CF centers, 95% of the CF NBS-positive infants completed recommended sweat testing. In contrast, there was wide disparity in compliance (32%-90%) with completion of genetic counseling between CF centers. CONCLUSION: CF centers that escorted parents through the 2 recommended follow-up steps in 1 day had higher compliance with the second step (genetic counseling) than centers that required a return visit for genetic counseling.