DISCUSSION BOARD PAPER

Sickle Cell Anemia- Health Promotion Plan

Sickle Cell Anemia- Health Promotion Plan

1. Goals and Objectives/Behavioral Outcomes expected

Sickle cell disease: health promotion and maintenance and the role of primary care nurse practitioners. The programs have established coordinated, comprehensive and family-centered networks to promote the integration of primary and subspecialty health care within medical homes for persons with sickle cell diseases and other hemoglobinopathies. The networks enhance clinical and social support follow-up services as well as support their families. Program activities also focus on health promotion, education and training and the improvement of treatment of sickle cell disease throughout an individual's life course. 2. Review of data/assessment supporting the choice of the topic and target population

The Sickle Cell Disease Treatment and Demonstration Program was established in 2004 to improve access to services for individuals with sickle cell disease, improve and expand patient and provider education, improve and expand the continuity and coordination of service delivery for individuals with sickle cell disease or who are carriers of the sickle cell gene mutation. (Braunwald et. al., 2001)  Grantee networks have two main goals, first to support the provision of coordinated, comprehensive, culturally competent and family-centered care for individuals living with sickle cell disease and second, to work collaboratively with partners such as Federally Qualified Health Centers; nonprofit hospitals or clinics; university health centers offering primary care; subspecialty comprehensive sickle cell centers; and community-based organizations that provide resources to people living with sickle cell disease.  

A national coordinating center was created to coordinate and support grantee networks through technical assistance and information exchange; build and sustain partnerships; centralize data collection and analysis; review and develop educational materials; identify performance measures and quality indicators; and identify best practices relative to prevention and treatment of Sickle Cell Disease.

3. Discussion of strengths and competencies of the target audience

The Sickle Cell Disease for Newborn Screening Program was established in 2002 to utilize a regional approach to support community-based systems of care. Program grantees establish a network of community partners to provide a seamless system for the early detection and proper treatment of hemoglobinopathies.  These partners represent providers of both the clinical and social services needs of individuals living with sickle cell disease.  Community-based networks partner with State Title V and state newborn screening programs, comprehensive sickle cell treatment centers, and health care professionals, national service organizations, allied health practitioners organizations and specialists to provide support to individuals across the life course who have screened positive for sickle cell disease and/or carriers of the sickle cell gene mutation, and their families. (Braunwald et. al., 2001)

The projects work cooperatively with their National Coordinating and Evaluation Center to implement a model program of follow-up for individuals with sickle cell diseases or who may carry the genetic mutation for the disorder to include notification of results of newborn screening, extended family testing, counseling and education of identified individuals and their families, and enrollment of affected individuals into a medical home.

4. Discuss how you would incorporate the Biblical Worldview into your ...