Problem

Though newborn screening (NBS) for sickle cell disease (SCD) has been a public health success, there remain three major problems that our NBS follow-up programs have not fully addressed: sickle cell trait (SCT) counseling, care coordination and integration of community resources, and community understanding of SCD and trait.

Goals and Objectives

To serve the family from NBS to the medical home: 1) All pregnant women with SCT and mothers identified with an infant with SCT will receive genetic counseling, and appropriate extended family testing. 2) All women at risk for having an infant with SCD will be connected to a parent-to-parent support partner. 3) All infants with SCD will have yearly care plans coordinated between parent, Pediatrician, and Hematologist. 4) All families of infants with SCD will have yearly needs assessments, be connect to community resources and a parent-to-parent support partner. 5) SCD and trait education will be provided to family community support structure. 6) SCD and trait education will be coordinated with community-based organizations and other health outreach efforts.

Methodology

We will meet these objectives by creating a problem-solving partnership among the community based SCD organizations, SCTPN and the comprehensive SCD centers of Harlem, Jacobi, and Lincoln Hospitals. This partnership will drive our change from passive service providers to problem solvers, connecting the assets of our community to meet the needs of infants and families affected by SCD and SCT. The objectives will be implemented using the performance improvement methodology, implementation teams, the Project Coordinator and two Health Educators.

Coordination

We have formed an advisory board of the major stakeholders for NBS, SCD and community health. This board will work closely with the projects leadership to ensure communication and coordination.

Evaluation

We will use both quantitative and qualitative measures. For example, we will monitor utilization and satisfaction with parent-to-parent support, track percentages of families counseled and their satisfaction; monitor use of care plans, need evaluations, utilization of community services and satisfaction; track numbers of community contacts.

Key Words

Sickle Cell Disease, Children with Special Health Needs, Community Based Health Education, Genetic Services, Genetic Education, Genetic Screening, Hispanics, African Americans

Annotation

We will enhance the follow-up component of NES by ensuring that counseling, care coordination with integration of community resources, and education are an integral part of our medical home. We will do this by creating a problem solving partnership between a community based SCD organization and three comprehensive SCD centers to drive the connection of community assets to meet the needs of SCD and SCT infants and families.

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