Sickle cell disease is a chronic disease with myriads of physical, psychological and social problems. The population in which it occurs is socio-economically disadvantaged. This results in fragmented approach to health care which emphasizes emergency room visits and hospitalizations. Episodic care of acute illnesses and neglect of preventive care, health maintenance, patient education, and psychosocial aspects fail to improve the overall quality of life of the patient and are also quite expensive. For example, emergency care and hospitalizations of only 15% of patients constitute 77% of health care costs related to sickle cell disease at this center. To address these problems, we have developed a comprehensive, multi-disciplinary approach directed at evaluating each individual's medical, psychological, social and educational/vocational needs and providing or recommending preventive care and psychosocial support. We have also evaluated health care utilization patterns of patients, social impact of sickle cell disease and adaptation by the family, and prevalence of psychological and psychiatric problems. Our preliminary work demonstrates needs for future research in the following areas; evaluation of impact of comprehensive approach on quality of life of patients, validation of existing quality of life evaluation instruments for sickle cell disease, evaluation of impact of patient education on utilization of services and overall quality of life, and psychosocial research to improve coping skills of the patient and the family. The goal of this project is to further develop the comprehensive approach and test the hypothesis that the comprehensive approach contributes to improved quality of life and reduces health care costs. This will be achieved by (1) enhancing coordination of the multi-disciplinary team, (2) educating patients in appropriate utilization of the health care system, (3) determining validity of quality of life indices in sickle cell patients and to evaluate the quality of life os sickle cell patients, (4) determining costs of health care and evaluating the impact of the comprehensive health care program, and (5) developing a resource for clinical studies of sickle cell disease. This project relates to the main goal of the center which is to improve the quality of life of sickle cell patients.
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