Sickle cell disease (SCD) is a chronic illness with multiple complications requiring lifelong specialized care by health care professional of various disciplines. Because a universal cure for SCD has not yet been achieved, for optimal outcome complications must be recognized promptly and managed using treatment modalities demonstrated to be effective. To effectively serve this population, medical personnel must have access to information on such modalities, particularly as new strategies are developed. In addition, patients, particularly as they enter the adult health care setting, must have the skills to interact effectively with the medical system.
The aims of this project are to continue the series of symposia presented during the previous grant cycle (Specific Aim 1); to develop, test, and implement systems of basic education for practitioners (Specific Aim 2); and to design and test a model for the transition of adolescent sickle cell patients from the pediatric to the adult setting (Specific Aim 3).
Specific Aim 1 will be a continuation of the series of symposia we initiated in the previous grant cycle that are presented in conjunction with national meetings related to SCD as well as in coordination with regional groups. This series has attracted larger than expected enrollment and resulted in highly positive evaluations.
Specific Aim 2 is related to the need for basic education in SCD among those new to the field of SCD. We propose to develop and test the following educational strategies: a self learning guide, a comprehensive basic curriculum, and course presentations utilizing the basic curriculum. These components will be developed and pilot tested in conjunction with an interdisciplinary panel representative of target professionals. Courses will differ from the symposia described in Aim 1, as they will strictly adhere to the designated curriculum and will be designed for these new the field of SCD. Evaluation will be based on changes in knowledge base and utilization.
Specific Aim 3 is in response to the recognition that for many young patients the transition from he pediatric health care setting to the adult setting is particularly stressful. We will develop and evaluate a model for fostering the successful transition of adolescent sickle cell patients into an adult care setting. This two-year period of preparation will involve the young patient and his current and future health care team. Incorporated in this model will be ongoing education on SCD utilizing the teaching tools that have been developed within this Center, development of an education module to address employment and insurance issues, and a systematic program to shift the responsibility for patient-related tasks away from the patient's family and into the patient's hands. Evaluation will be made by comparing outcome using various parameters for these patients enrolled in this program in comparison with those who did not have such interventions.
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