Purpose

The Brooklyn Hospital Center (TBHC) operates a comprehensive sickle cell center and a regional genetics center. Together with another comprehensive regional center, Interfaith Medical Center, TBHC will expand outreach into the communities they serve. We will facilitate the early identification of individuals with SCD heritable conditions, provide counseling and follow-up. Reaching infants identified with sickle cell disease and integrating them into a community-based network of care is key. Our expanded programs will extend outreach into our community for earlier interventions for screening and strengthened follow-up counseling and education. We will build a strengthened collaborative among our community based partners and with three other regional SCD programs.

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 will emphasize primary care and screening programs. Make in-roads into the lack of coordination of care and poor communication resulting in patients being lost in the system. Strengthen community linkages to maintain families and their children in treatment. Provide family testing and genetic testing and counseling. A culturally sensitive health education and training program will be fine-tuned for the community organizations. 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 contracts. Our educational efforts will integrate individual counseling, group classes, 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 among community-based and faith organizations on sickle cell disease and other genetic conditions. Develop and enhance community-based intervention strategies that provide education on treatment and care management strategies.

Methodology

We will take our knowledge base and collaborate with our community-based organizations. The CBOs can make a big difference in education, assisting in early diagnosis and improving compliance rates and drop out rates. These three problem areas form the nucleus of our implementation 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. This experience curve will prove invaluable as we expand our programs into the community.

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

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.

Text of Annotation

TBHC operates a comprehensive sickle cell center and a regional genetics center. Along with another comprehensive regional center will expand outreach into the communities they serve. We will facilitate the early identification of individuals with SCD heritable conditions, provide counseling and follow-up. Poverty, the cultural diversity and the many languages spoken impede access to health and to genetic counseling. 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.

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