Purpose

The Brooklyn Hospital Center (TBHC) operates a comprehensive sickle cell center and a regional genetics center and is one of 15 federally designated Sickle Cell Disease and Newborn Screening Program funded in 2002 by HRSA. We lead a consortium of 20 community-based organizations and several hospitals in a rigorous, proactive approach to Sickle Cell health education, outreach, community awareness, advocacy, treatment, follow-up and comprehensive medical care program. Together with our community partners and linkage agreements, TBHC continues to build on its early identification and screening programs through further expansion of its outreach and education. We facilitate early identification of individuals with SCD heritable conditions and provide counseling and follow-up. We reach infants identified with sickle cell disease and integrate them into a community-based network of care. Our collaboration with community-based providers maximizes outreach and assures earlier interventions for screening and strengthened follow-up counseling and education. Our collaborative with our community-based partners has solidified during this year and with new funding we will expand our outreach exponentially.

Challenges

We serve 1.5 million people in northern and central Brooklyn, a multiracial and multiethnic service area with young and growing immigrant communities that are among the most economically distressed and medically underserved in New York. The high degree of poverty, the cultural diversity and the many languages spoken here impede access to health care at large and to genetic counseling in particular. Our patients have difficulty understanding the official notification of the newborn screening report, substantially delaying the treatment of their hemoglobinopathy. Insurance barriers are significant for compliance efforts. We have found that upon notification of known traits, patients without insurance are the least likely to follow up and be tested. Maintaining children in care is perhaps one of our most serious and difficult challenges.

Goals and Objectives

Increase our penetration into the need by 25% through broadened education and counseling to more fully embrace community organizations by: tailoring/identifying outreach strategies for newborns testing positively and who may lack insurance; develop community-based genetic screening programs for all ages and socio-economic strata; increase rates of early diagnosis through compliance programs. Continuous education to ensure compliance with the prescribed medical regimens and overcome distrust of the medical system. Partnership programs emphasize primary care and screening. Strengthened community linkages to maintain families and their children in treatment. We provide family and individual screening and genetic counseling. Our health education and training programs are culturally sensitive. Drawing on the experiences and biases of one another in community organizational, collaborative approaches to patient care management will deal with the SCD compliance and patient drop out problem we experience. The staff of community-based organizations can make the initial contact with the affected family and maintain subsequent contacts. Our educational efforts integrate individual counseling, workshops, audiovisual aids, written materials and community resources and Health Fairs into the mix of educational programs for the community. Leadership development will assure long-term sustainability by providing in-service education on sickle cell disease and other genetic conditions for community and faith-based organizations

Methodology

From our knowledge base we will expand our collaborations with our community-based organizations. The CBOs contribute significantly in education, assisting in early diagnosis and improving compliance rates and drop out rates. These three problem areas form the nucleus of our strategy. Our SCD Center has developed an active case management program relying on our dedicated social worker and our nurse/genetics counselor. Our child life advocate is also an important member of the case management team. Our clinical case management program is the basis of our core education and outreach model. Within our hospital we have learned to integrate education, counseling, nutrition, cultural nuances and treatment into the lives of our patients and families. Our support groups have proven invaluable in this regard.

Evaluation

Our evaluation protocols will be developed from outset and used as benchmarks to monitor our performance throughout the project. The PI and the Project Director will evaluate strategies for performance monitoring and program evaluation including the client outcome data collection instruments, assessment tools and collection of programmatic statistical information. The project evaluator will join our team at outset so that the evaluation protocols are part of the program from day one. The program evaluation team will develop an evaluation study design, establish procedures for data collection and analysis, design data collection instruments, and mechanisms for reporting and disseminating evaluation findings.

Experience to Date

The Brooklyn Hospital Center is one of 15 regional/community Sickle Cell Disease and Newborn Screening Sites. Both our Comprehensive Sickle Cell program and our regional Genetics Service have been in existence for 11 years, 350 SCD patients, 15,000 genetics tests annually. We are making in-roads into the lack of coordination of care and poor communication. During the last year, we have concretized our community partnership program and developed our working relationship with the national coordinating center. We have touched the lives of over 500 individuals, we have conducted pre-test and post tests of our training workshops and education sessions on nearly 100 individuals. We have formed a very successful sickle cell support group that convenes regularly and a support group for our teens. We have added nearly 100 new patients to our sickle cell program for health maintenance.

^ TOP ^
Back to Project Grantees.

Copyright © 2003, Sickle Cell Disease Association of America