Prevention of Complications in Hemophilia Through HTCs

通过 HTC 预防血友病并发症

• 批准号: 7232180
• 负责人: Marilyn J Manco-Johnson
• 金额: $ 30万
• 依托单位: UNIVERSITY OF COLORADO DENVER
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-09-30 至 2011-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7232180
• 关键词: blood coagulation disorders; clinical research; comprehensive medical planning; cooperative study; disease /disorder prevention /control; epidemiology; hemophilia As; human subject; medical complication; outcomes research; von Willebrand' s disease

DESCRIPTION (provided by applicant): The purpose of this proposal is to continue the direct patient care family-centered, community-based comprehensive hemophilia and thrombophilia services by supporting the successful existing structure of the five Hemophilia Treatment Centers (HTCs) in MCHB Region VIII serving Colorado, Montana, Wyoming, Utah, New Mexico and Arizona. Challenges: Providing care to persons with a rare, chronic disease in a large geographic area presents significant challenges. This region of the country has realized unprecedented growth over the past decade and this has strained existing health care resources at a time of level funding. In addition, there is over 90% penetration of managed care in the payer market providing challenges to the HTC staff in coordinating care within those systems. Supplementing unreimbursed care for patients is a primary response to this challenge. There are large groups of ethnic and racial minorities in some of the states providing language and culture challenges. Goals and objectives: The goals of this project are as follows: (a) Foster direct patient services including comprehensive care systems that provide culturally sensitive, family-centered care coordinated through a regional system of hemophilia diagnostic and treatment centers. Provide access to comprehensive call for all currently served, underserved, or newly identified patients with hemophilia/HIV and their families by providing direct services not reimbursed by third party payers; (b) Place care emphasis on prevention to educe the complications and morbidity associated with hemophilia; (c) Provide services to women with congenital bleeding disorders; (d) Coordinate services with State Title V MCH programs, prevention, education and peer support activities of the NHF and prevention and education initiatives of the CDC. Methodology: Continue the existing structure of HTCs in Region VIII using past successes of treatment center approaches including direct patient care service provision of comprehensive care and diagnosis of patients, education, outreach to underserved populations, outreach to women with bleeding disorders and preventions of morbidities associated with hemophilia. Expand services to persons with clotting disorders within the same HTC structure. Experience to date: The HTCs in Region VIII have a history of excellent care and organizational coordination, and each center has developed a strong referral network for all patients within their catchment area that assures access to care for these patients. This region has strong leadership and a history of successful clinical research that enhances patient care.

描述（由申请人提供）：本提案的目的是通过支持MCHB第八区五个血友病治疗中心（HTCs）的现有结构，继续以家庭为中心的直接患者护理，以社区为基础的血友病和血栓病综合服务，服务于科罗拉多州，蒙大拿州，怀俄明州，犹他州，新墨西哥州和亚利桑那州。挑战：在大的地理区域为患有罕见慢性疾病的人提供护理是一项重大挑战。该国这一地区在过去十年中实现了前所未有的增长，这在资金水平较高的时候使现有的卫生保健资源紧张。此外，在付款人市场中，管理式医疗的渗透率超过90%，这对HTC员工在这些系统内协调护理提出了挑战。为患者补充未报销的护理是应对这一挑战的主要对策。在一些州有大量的少数民族和种族群体，这给语言和文化带来了挑战。目标和目的：该项目的目标如下：(a)促进直接的病人服务，包括通过血友病诊断和治疗中心的区域系统协调提供具有文化敏感性、以家庭为中心的综合护理系统。通过提供不由第三方付款人报销的直接服务，为所有目前得到服务、服务不足或新发现的血友病/艾滋病毒患者及其家属提供全面的呼叫；(b)将护理重点放在预防上，以减少与血友病有关的并发症和发病率；(c)向患有先天性出血性疾病的妇女提供服务；(d)与国家卫生基金的第五州妇幼保健方案、预防、教育和同伴支持活动以及疾病预防控制中心的预防和教育倡议协调服务。方法：利用过去治疗中心方法的成功经验，延续第八区HTCs的现有结构，包括提供全面护理和患者诊断的直接患者护理服务、教育、向服务不足的人群外展、向有出血性疾病的妇女外展以及预防血友病相关的发病率。在同一HTC结构内扩大对凝血障碍患者的服务。迄今为止的经验：第八区的卫生保健中心具有良好的护理和组织协调的历史，每个中心都为其集水区内的所有患者建立了强大的转诊网络，以确保这些患者获得护理。该地区拥有强大的领导能力和成功的临床研究历史，可以加强患者护理。