Models of Care and Research in Thrombosis and Thrombophilia

描述（由申请人提供）：科罗拉多大学健康科学中心和山州地区血友病和血栓中心从1973年开始提供全面的血友病医疗和心理社会护理。在多学科专家的指导下，采用相同的护理模式，2001年开始为血栓患者和血栓形成人群以及出血妇女提供服务。在提供资金的第一阶段，建立了面向成人和儿童的妇女和血栓诊所的基础设施。服务包括诊断、住院和门诊护理、后续护理、教育、诊断和教育的家庭外展、社区教育以及与患者倡导团体的互动。这项合作协议将使该项目继续发展，开发更多的教育材料，扩大我们的研究工作，并为全国血友病和血栓病诊所提供一个协调的模式。该项目的目标是：1)确定综合跨学科护理和预防服务对血友病、其他遗传性出血性疾病（包括妇女出血性疾病）和血栓病患者的疗效，以降低与出血和凝血疾病相关的发病率和死亡率；2)评估服务提供方面未满足的需求，确定旨在改善获得医疗服务的外展战略；3)制定针对疾病管理和预防的有效信息；4)促进培训计划的发展，以提高提供者提供止血和血栓治疗的技能。将通过问卷调查从参与的患者中收集数据，以计划未来的预防活动。

DESCRIPTION (provided by the applicant): The University of Colorado Health Sciences Center and Mountain States Regional Hemophilia and Thrombosis Center have provided comprehensive hemophilia medical and psychosocial care beginning in 1973. Using this same model of care with specialists in multiple disciplines, services to the thrombophilia and thrombosis population as well as women with bleeding began in 2001. During the first phase of funding, the infrastructure of the women's and thrombosis clinics was established with both the adult and pediatric populations. Services include diagnosis, in- and out-patient care, follow-up care, education, family outreach for diagnosis and education, community education and interaction with the patient advocacy group. This cooperative agreement will enable the program to continue to grow, develop more educational materials, expand our research efforts and provide a model for coordinated hemophilia and thrombophilia clinics nationally. The goals of this project are: 1) determine the efficacy of integrated interdisciplinary care and prevention services for persons with hemophilia, other hereditary bleeding disorders including women with bleeding disorders, and thrombophilia to reduce morbidity and mortality associated with bleeding and clotting diseases; 2) assess unmet needs for service delivery and identify outreach strategies designed to improve access to care; 3) develop effective messages aimed at disease management and prevention; and 4) foster the development of training programs to enhance provider skills for the delivery of hemostasis and thrombosis care. Data will be collected by questionnaire from participating patients to plan future prevention activities.