Prevention of Complications in Hemophilia Through HTCs

简介(由申请人提供)：本建议书旨在透过支持母婴健康院第VIII区的五个血友病治疗中心(HTCs)的成功现有架构，继续提供以家庭为中心、以社区为基础的直接病人护理血友病及血栓形成综合服务，为科罗拉多州、蒙大拿州、怀俄明州、犹他州、新墨西哥州及亚利桑那州提供服务。挑战：在很大的地理区域内为患有罕见慢性病的人提供护理是一项重大挑战。在过去十年中，这个国家的这一区域实现了前所未有的增长，这使现有的卫生保健资源在资金水平有限的情况下捉襟见肘。此外，管理式医疗在付费市场中的渗透率超过90%，这给HTC员工在这些系统内协调医疗服务方面带来了挑战。补充患者的无偿护理是对这一挑战的主要回应。在一些提供语言和文化挑战的州，有大量的少数民族和少数族裔。目标和目的：该项目的目标如下：(A)促进直接的患者服务，包括全面的护理系统，通过血友病诊断和治疗中心的区域系统协调提供文化上敏感的、以家庭为中心的护理。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人提供全面的呼吁；(B)将护理重点放在预防上，以减少与血友病相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)协调与国家第五章妇幼保健计划、全国妇幼保健局的预防、教育和同行支持活动以及疾控中心的预防和教育举措。方法：利用治疗中心过去的成功做法，延续第八区HTC的现有结构，包括直接患者护理服务，提供全面的患者护理和诊断，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，以及预防与血友病相关的疾病。将服务扩展到同一HTC结构内的凝血障碍患者。到目前为止的经验：地区的HTC有着出色的护理和组织协调的历史，每个中心都为其覆盖范围内的所有患者建立了强大的转诊网络，以确保这些患者能够获得护理。该地区拥有强大的领导力和成功的临床研究历史，可以提高患者的护理水平。

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.