Purpose / Challenges

The Community-Based Sickle Cell Project, housed at Brookdale University Medical Center in Brooklyn, NY, and founded in 2002 with HRSA funding, will continue to provide comprehensive health care and outreach services through a community-based collaborative program. Brookdale and its partners serve over 60% of Brooklyn's 2.3 million residents, a population characterized by ethnic diversity and numerous barriers to health care. Because of the high proportion of Blacks, Latinos, and Caribbean immigrants, the community has a high prevalence of sickle cell disease and trait.

Goals and Objectives

The Project works to improve health outcomes for patients with sickle cell disease, increase community understanding of sickle cell disease, and promote detection, genetic counseling, and education for families with sickle cell trait through 6 objectives: Increase patient, public, and professional awareness and knowledge of sickle cell disease; identify patients with sickle cell disease or trait, especially those born to immigrant parents prior to their arrival in the United States; provide rigorous follow-up and counseling of patients and their family members referred by the State Newborn Screening Program with hemoglobinopathy trait; improve the follow-up rates for newborns and children with sickle cell disease; enhance adherence to treatment regimens and preventative care; and screen and counsel uninsured parents of children with the disease or trait.

Methodology

The Project is a collaborative program between 4 hospitals (Brookdale, SUNY Downstate Medical Center, Kings County Medical Center, and Interfaith Medical Center) and two community-based organizations, Brownsville Multi-Service Family Healthy Center and the Caribbean Women's Health Association. Grant-funded staff members will conduct outreach, education, and counseling and follow-up trait, sickle cell disease patients, and parents.

Evaluation

A Project Coordinator will link the partnering organizations, and a Project Management Advisory Committee, consisting of representatives from each partner and from other consumer and provider organizations, will support planning, development, implementation, and reporting. The Project has as demonstrated history of working closely with the National Coordinating and Evaluation Center for Sickle Cell Disease and the New York State Newborn Screening Program. (NYS NBS)

Coordination

The evaluation plan will include qualitative and quantitative approaches to data collection and analysis. Techniques to track and evaluate the project include: a log of outreach activities and outcomes; patient and client satisfaction surveys; attendance records at outreach/education events; referral tracking; and program utilization at the hospitals including new referrals, numbers of trait and disease patients counseled, results of knowledge surveys and treatment adherence follow-up.

Key Words

children with special health needs, community based health education, community based health services, family centered health education, genetic counseling, genetic screening, hemoglobinopathies, hospitals, infant screening, newborn screening, outreach, patient education, sickle cell disease, service coordination, urban population.

Annotation

The Community-Based Sickle Cell Project will expand and enhance services for SCD! trait patients through a collaboration between Brookdale, SUNY Downstate, Kings County, Interfaith, Brownsville, CWHA and NBS to create a comprehensive system for disease and trait detection, genetic counseling, 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 CBOs' culturally competent outreach and community networking skills.

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Copyright © 2003, Sickle Cell Disease Association of America