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. ? ? ?
| Manco-Johnson, Marilyn J; Soucie, J Michael; Gill, Joan Cox et al. (2017) Prophylaxis usage, bleeding rates, and joint outcomes of hemophilia, 1999 to 2010: a surveillance project. Blood 129:2368-2374 |
