Purpose

The Community-based Collaborative Program for Sickle Cell Outreach, Education and Care in Brooklyn will expand and enhance our existing services through an innovative collaborative program. This collaboration will include another major medical center, State University of New York Downstate Medical Center (SUNY Downstate) and the two community based organizations, Brooklyn Perinatal Network (BPN) and Caribbean Women’s Health Association (CWHA). The partnership will provide a coordinated and seamless system for genetic counseling for hemoglobinopathy trait and disease, and for the detection, management, and treatment of SCD in our community.

Challenges

BUMC and its partners serve over 60% of Brooklyn’s 2.4 million residents, a population characterized by poverty, racial and cultural diversity. Barriers to health care exist as indicated by high infant mortality and morbidity. Because of the high proportion of African Americans, Hispanic Americans, and Caribbean immigrants, we have a high prevalence of sickle cell disease (SCD) and trait. Our challenge is to form a web of care for all in our community with SCD and trait, to include screening, culturally competent genetic counseling, and follow-up care.

Goals and Objectives

The overall project goal is to improve health outcomes for those with SCD.

Specific objectives are:

1. to increase patient, public, and professional awareness and knowledge of SCD, with particular attention to newborn/child screening, counseling, and early intervention;
2. to identify patients with SCD who are not targeted by the NYS Newborn Screening Program or referred by primary care physicians, namely, those born to Caribbean immigrants prior to arrival in the United States;
3. to provide more rigorous follow-up and counseling of patients with sickle cell trait identified by Newborn Screening and other sources;
4. to improve follow-up rates for newborns/children with SCD; and,
5. to enhance adherence to treatment regimens.

Methodology

A community demonstration model, the basis for the project, will involve collaboration between two medical centers (BUHMC and SUNY Downstate/Kings County) and two grassroots community organizations (BPN and CWHA). A Project Coordinator will be the link between the partnering organizations, and a Project Management Team will support planning, development, implementation, and reporting activities. To establish a truly seamless link between the partners, two Health Education Assistants will be based at BUHMC and out stationed at Downstate, BPN, and CWHA. The Project Coordinator and the Health Education Assistants will conduct community outreach/ education and counseling and follow-up trait and SCD patients. Key staff at the partnering organizations will provide technical assistance to the Health Education Assistants: participate in Project Management Team meetings, and review documents and deliverables.

Evaluation

The evaluation plan will include qualitative and quantitative approaches to data collection and analysis. Techniques to examine the impact of community outreach will include: an Encounter Log of the nature/outcome of all communication with all participating community-based organizations (CBOs); a Survey of Community Agencies to elicit feedback on their role/perceived success; a record of attendance at community outreach/education events; tracking of new referrals; education/counseling sessions with SCD and trait patients (families); referrals for follow-up services. Program utilization at the two medical centers will be tracked, including: new referrals; numbers of trait and disease patients counseled, patient encounters and adverse clinical events. Health outcome indicators will also be monitored such as hospital admission rates.

Experience to Date

BUHMC’s Division of Pediatric Hematology/Oncology has been successfully providing comprehensive services to children with SCD for more than 25 years and its program has earned an excellent reputation. In 1995, the Program was awarded a federally funded Maternal and Child Health Bureau’s (MCHB) Genetic Services Grant that was renewed through 2002. A NYS Genetic Services Grant (July 1999-June 2001) expanded the Program to include services through age 21. The Division of Community Pediatrics works with CBOs as part of a federally funded Healthy Start Grant, including NYCDOH, BPN and CWHA.

Text of Annotation

The Community-based Collaborative program for Sickle Cell Outreach, Education and Care in Brooklyn will expand and enhance existing services for SCD/ trait patients through collaboration with SUNY Downstate, BPN, and CWHA, creating a seamless system for SCD detection, genetic counseling, management, and treatment. To meet the challenge of serving a large population characterized by poverty, racial diversity, poor health status, and a high prevalence of trait and SCD, we will establish a broad-based program of outreach/education aimed at bringing patients into the healthcare system. Two Health Education Assistants will be based at BUHMC and out stationed at Downstate, BPN, and CWHA.

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