CORE--SICKLE CELL ANEMIA CLINICAL SUPPORT

核心--镰状细胞贫血症临床支持

• 批准号: 3758631
• 负责人: YIH-MING YANG
• 金额: --
• 依托单位: UNIVERSITY OF SOUTH ALABAMA
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/3758631
• 关键词: adolescence (12-20); biomedical facility; comprehensive care; genetic counseling; health care cost /financing; health care quality; health care service evaluation; health care service utilization; health education; human subject; longitudinal human study; mental disorder diagnosis; mental health services; psychological tests; quality of life; sickle cell anemia

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.

镰状细胞病是一种慢性疾病， 心理和社会问题。 它发生的人群是 在社会经济上处于不利地位。 这导致了分散的方法 医疗保健强调急诊室就诊， 住院治疗 急性疾病的偶发性护理和忽视 预防护理、健康维护、患者教育和心理社会 这些方面不能改善患者的整体生活质量， 也相当昂贵。 例如，紧急护理和 只有15%的病人住院治疗构成了77%的卫生保健 与镰状细胞病相关的费用。 解决这些 问题，我们已经制定了一个全面的，多学科的方法， 旨在评估每个人的医疗，心理，社会 教育/职业需要，并提供或建议预防 护理和心理支持。 我们还评估了医疗保健 病人的利用模式，镰状细胞病的社会影响 和适应，以及心理和 精神问题 我们的初步工作表明了未来的需求 在以下领域进行研究;评估综合方案的影响 患者生活质量方法，现有质量验证 镰状细胞病生命评价仪器的评价 患者教育对服务利用和总体的影响 生活质量和心理社会研究，以提高应对技能， 患者和家属。 该项目的目标是进一步 制定全面的方法，并测试假设， 综合办法有助于提高生活质量， 降低医疗保健成本。 这将通过以下方式实现：（1）加强 多学科团队的协调，（2）教育患者 （3）合理利用卫生保健系统; 镰状细胞病患者生活质量指标的有效性 评价镰状细胞病患者的生活质量，（4）确定 卫生保健费用和评估的影响，全面 卫生保健计划，以及（5）开发临床研究资源 镰状细胞病 该项目涉及的主要目标是 该中心旨在改善镰状细胞病患者的生活质量。