Purpose

The Community-Based Sickle Cell Project for sickle cell outreach, education and care, housed at Brookdale University and Medical Center (Brookdale) in Brooklyn, NY, will expand and enhance existing services through a collaborative program. In addition to Brookdale, this collaboration will include three other medical centers, the State University of New York Downstate Medical Center, Kings County Hospital Center, and Interfaith Medical Center, as well as two community-based organizations, Brooklyn Perinatal Network (BPN) and Caribbean Women’s Health Association (CWHA). Together, 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 sickle cell disease by providing expanded community outreach, counseling, education, and screening services.

Challenges

Brookdale and its partners serve over 60% of Brooklyn’s 2.3 million residents, a population characterized by poverty and racial and cultural diversity. Barriers to health care exist as indicated by high rates of infant mortality and morbidity. Because of the high proportion of African-Americans, Hispanic-Americans, and Caribbean immigrants, the community has a high prevalence of sickle cell disease and trait. The proposed partnership will form a comprehensive network of care, including screening, culturally competent genetic counseling, and follow-up care.

Goals and Objectives

The overall project goal is to improve health outcomes for those with sickle cell disease or trait. Specific objectives are:

1. to increase patient, public, and professional awareness and knowledge of sickle cell, with particular attention to newborn/child screening, counseling, and early intervention;
2. to identify patients with sickle cell disease who are not targeted by the NYS Newborn Screening Program or referred by primary care physicians, especially 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;
5. to enhance adherence to treatment regimens; and
6. to screen and counsel uninsured parents of children identified to have the disease or trait.

Methodology

A community-based model will be the basis for the proposed project. Though it will be centered at Brookdale, it will represent a collaborative effort by the participating hospitals (Brookdale, SUNY Downstate, Kings County, and Interfaith) and two community-based organizations, BPN and CWHA. The Project Coordinator will link the partnering organizations, and a Project Management Advisory Committee, comprised of representatives from each partner as well as from other consumer and provider organizations, 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 Brookdale and out-stationed at Downstate, Kings County, Interfaith, BPN, and CWHA. The Project Coordinator and the Health Education Assistants will conduct community outreach, education, and counseling and follow-up trait, sickle cell disease patients, and parents. Key staff at the partnering organizations will provide technical assistance to the Health Education Assistants, participate in Project Management Team meetings, implement best practices, and monitor the project.

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; patient and client satisfaction surveys, attendance records at outreach/education events; and referrals tracking. 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 such as hospital admission rates will also be monitored.

Experience to Date

In 2002, Brookdale received a HRSA grant through the 2002 Genetic Services Branch initiative for sickle cell disease and newborn screening services, the basis for the proposed program. Brookdale’s Division of Pediatric Hematology/Oncology has been successfully providing comprehensive services to children with SCD for more than 25 years. 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.

Text of Annotation

The Community-Based Sickle Cell Project will expand and enhance existing services for SCD/ trait patients through a collaboration between Brookdale, SUNY Downstate, Kings County, Interfaith, BPN, and CWHA to create a seamless system for disease and trait detection, genetic counseling, management, and treatment. To meet the challenge of serving a large population characterized by poverty, racial diversity, poor health, and a high prevalence of trait and disease, Brookdale and its partners will establish a broad-based program of outreach, education, and counseling aimed at bringing patients into the healthcare system. The project is based upon the comprehensive medical care at the health centers in conjunction with the culturally competent outreach and community networking skills of the CBOs.

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