Integrated Program for Persons with Hemostatic Disorders

诊断测试和治疗管理的最新进展大大提高了我们的能力， 为患有止血障碍的患者提供护理。许多人仍然没有得到充分的评价， 然而，由于各种原因而接受治疗，包括诊断测试不完整或不正确、不充分 管理策略，以及患者无法获得医疗保健系统。我们实施了杜克 综合止血和血栓中心将杜克大学卫生系统现有的临床专业领域整合为一个协调的服务。该中心还提供了获得临床研究的机会，强调患者教育，并为对止血障碍感兴趣的医疗保健提供者提供了制定培训计划的基础。以下目标将加强杜克止血与血栓中心的活动和使命。 (1)确定综合多学科护理和预防服务对血友病、其他遗传性出血性疾病（包括患有出血性疾病的妇女）和血栓形成倾向患者的有效性，以降低与出血和凝血疾病相关的发病率和死亡率。监测策略将侧重于临床结局、患者可及性和患者满意度。 (2)评估未得到满足的服务需求，并确定旨在改善获得护理机会的外联战略。将在地方一级以及区域和国家一级查明未满足的需求。 (3)制定旨在疾病管理和预防的有效信息。将开发基于互联网和基于纸张的教育信息，以提高患者的认识和教育。 (4)促进制定培训方案，以提高提供者向止血障碍患者提供护理的技能。 我们将使用通过这些目标获得的信息来提高杜克止血与血栓形成中心提供的临床服务的质量，并为医疗保健提供者、临床研究人员和基础研究人员提供特殊的培训机会。

Recent advances in diagnostic testing and therapeutic management have greatly improved our ability to deliver care to patients with disorders of hemostasis. Many individuals remain inadequately evaluated or treated, however, for a variety of reasons, including incomplete or incorrect diagnostic testing, inadequate management strategies, and patient lack of access to the healthcare system. We implemented the Duke Comprehensive Hemostasis & Thrombosis Center to integrate existing areas of clinical expertise in the Duke University Health System into a coordinated service. The Center also provides access to clinical research 3rotocols, emphasizes patient education, and has provided the groundwork for developing a training program for healthcare providers interested in disorders of hemostasis. The following Aims will enhance the activity and mission of the Duke Hemostasis & Thrombosis Center. (1) Determine the efficacy of integrated multi-disciplinary 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. Monitoring strategies will focus on clinical outcomes, patient access, and patient satisfaction. (2) Assess unmet needs for service delivery and identify outreach strategies designed to improve access to care. Unmet needs will be identified at a local level as well as at regional and national levels. (3) Develop effective messages aimed at disease management and prevention. Internet-based as well as paper-based educational messages will be developed to promote patient awareness and education. (4) Foster the development of training programs to enhance provider skills for the delivery of care to persons with disorders of hemostasis. We will use the information obtained through these Aims to enhance the quality of the clinical services that are provided through the Duke Hemostasis & Thrombosis Center, as well as developing exceptional training opportunities for healthcare providers, clinical researchers, and basic investigators.