Models of Care and Research in Thrombosis and Thrombophilia

描述（由申请人提供）：从1973年开始，科罗拉多大学健康科学中心和山区各州区域血友病和血栓形成中心提供了全面的血友病医疗和心理社会护理。2001年开始使用这种由多学科专家提供的相同护理模式，为血栓形成倾向和血栓形成人群以及出血妇女提供服务。在供资的第一阶段，为成人和儿童建立了妇女和血栓形成诊所的基础设施。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、社区教育以及与病人倡导团体的互动。这项合作协议将使该计划能够继续发展，开发更多的教育材料，扩大我们的研究工作，并为全国协调血友病和血栓形成诊所提供一个模式。该项目的目标是：1）确定为血友病、其他遗传性出血性疾病（包括患有出血性疾病的妇女）和血栓形成倾向患者提供综合性跨学科护理和预防服务的效力，以降低与出血和凝血疾病相关的发病率和死亡率; 2）评估未满足的服务提供需求，并确定旨在改善获得护理机会的外联战略; 3）开发旨在疾病管理和预防的有效信息;以及4）促进培训计划的开发，以提高提供者提供止血和血栓形成护理的技能。将通过调查问卷从参与患者中收集数据，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.