Prevention of Complications in Hemophilia Through HTCs

描述（由申请人提供）：本提案的目的是通过支持MCHB第八区（服务于科罗拉多、蒙大拿、怀俄明州、犹他州、新墨西哥州和亚利桑那州）五个血友病治疗中心（HTC）的成功现有结构，继续提供以家庭为中心的直接患者护理、基于社区的血友病和血栓形成综合服务。挑战：在一个大的地理区域内为患有罕见慢性疾病的人提供护理是一项重大挑战。该国的这一地区在过去十年中实现了前所未有的增长，在资金水平紧张的情况下，这使现有的卫生保健资源紧张。此外，在支付者市场中，管理式护理的渗透率超过90%，这给HTC工作人员在这些系统内协调护理带来了挑战。为患者提供补充未报销的护理是应对这一挑战的主要措施。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。目的和目标：该项目的目标如下：（a）促进直接的患者服务，包括通过血友病诊断和治疗中心区域系统协调提供文化敏感、以家庭为中心的护理的综合护理系统。通过提供第三方付款人不报销的直接服务，为所有目前得到服务、得不到充分服务或新发现的血友病/艾滋病毒患者及其家属提供全面呼叫服务;（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）为患有先天性出血性疾病的妇女提供服务;（d）与国家妇幼保健方案第五条、国家保健基金的预防、教育和同伴支助活动以及疾病预防控制中心的预防和教育倡议协调服务。方法学：利用过去成功的治疗中心方法，包括直接患者护理服务，提供全面护理和患者诊断，教育，向服务不足的人群提供服务，向患有出血性疾病的妇女提供服务，以及预防血友病相关疾病，继续第VIII区现有的HTCs结构。在同一个HTC结构内扩大对凝血障碍患者的服务。迄今为止的经验：第八区的卫生技术中心有着良好的护理和组织协调的历史，每个中心都为其服务区域内的所有患者建立了强大的转诊网络，确保这些患者获得护理。该地区拥有强大的领导力和成功的临床研究历史，可提高患者护理水平。

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.