Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders

Abstract

Leonard A Valentino,1,2 Judith R Baker,3 Regina Butler,4 Miguel Escobar,5 Neil Frick,1 Susan Karp,6 Kollet Koulianos,1 Susan Lattimore,7 Diane Nugent,3 Joseph N Pugliese,8 Michael Recht,7,9 Mark T Reding,10 Michelle Rice,1 Constance B Thibodeaux,11 Mark Skinner12,13 1National Hemophilia Foundation, New York, NY, USA; 2Departments of Internal Medicine and Pediatrics, Rush University, Chicago, IL, USA; 3Center for Inherited Blood Disorders, Orange, CA, USA; 4Children’s Hospital of Philadelphia, Philadelphia, PA, USA; 5Department of Internal Medicine, University of Texas Health Science Center at Houston, Houston, TX, USA; 6University of California, San Francisco, San Francisco, CA, USA; 7Department of Pediatrics, Oregon Health & Science University, Portland, OR, USA; 8Hemophilia Alliance, Lansdale, PA, USA; 9American Thrombosis and Hemostasis Network, Rochester, NY, USA; 10Department of Internal Medicine, University of Minnesota Medical Center, Minneapolis, MN, USA; 11Departments of Internal Medicine and Pediatrics, Hemophilia Center, Tulane University School of Medicine, New Orleans, LA, USA; 12Institute for Policy Advancement Ltd, Washington, DC, USA; 13Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, CanadaCorrespondence: Leonard A ValentinoNational Hemophilia Foundation, 7 Penn Plaza Suite 1204, New York, NY, 10001, USATel [phone]Fax [phone]Email [email protected]: Rare, chronic diseases such as hemophilia and other congenital coagulation disorders require coordinated delivery of services for optimal outcomes. Hemophilia Treatment Centers (HTCs) are specialized, multidisciplinary health-care centers providing team-based care to meet the physical, psychosocial, and emotional needs of people with hemophilia (PWH) and may serve as a model for other rare coagulation disorders. Health-care purchasers, as well as the general medical community, may not appreciate the breadth and quality of services provided by HTCs. They exemplify the acculturalization and actualization of integrated care by providing comprehensive diagnostic and treatment services that reduce morbidity, mortality, avoidable emergency room visits, hospitalizations, and overall costs, while promoting a longer lifespan and improved patient functioning and outcomes. This is accomplished by a team-based approach relying upon a shared decision-making model to effectively prevent complications and manage symptoms in PWH, who are dependent on high-cost treatments. This article provides a concise yet comprehensive description of the core components of an HTC and the regional and national networks in the United States, which together achieve their incomparable value for all stakeholders.Keywords: hemophilia, coagulation disorders, integrated care, patient-centered care, health-care delivery network, multidisciplinary

Keywords

• hemophilia
• coagulation disorders
• integrated care
• patient-centered care
• healthcare delivery network
• multidisciplinary