Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders
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,...
| Main Authors: | , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Dove Medical Press
2021-10-01
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| Series: | Journal of Blood Medicine |
| Subjects: | |
| Online Access: | https://www.dovepress.com/integrated-hemophilia-patient-care-via-a-national-network-of-care-cent-peer-reviewed-fulltext-article-JBM |
| _version_ | 1818578401075658752 |
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| author | Valentino LA Baker JR Butler R Escobar M Frick N Karp S Koulianos K Lattimore S Nugent D Pugliese JN Recht M Reding MT Rice M Thibodeaux CB Skinner M |
| author_facet | Valentino LA Baker JR Butler R Escobar M Frick N Karp S Koulianos K Lattimore S Nugent D Pugliese JN Recht M Reding MT Rice M Thibodeaux CB Skinner M |
| author_sort | Valentino LA |
| collection | DOAJ |
| description | 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 +1 212 328 3700Fax +1 212 328 3777Email lvalentino@hemophilia.orgAbstract: 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 |
| first_indexed | 2024-12-16T06:45:13Z |
| format | Article |
| id | doaj.art-3ec2106fc10d43b992e117370d84afee |
| institution | Directory Open Access Journal |
| issn | 1179-2736 |
| language | English |
| last_indexed | 2024-12-16T06:45:13Z |
| publishDate | 2021-10-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Journal of Blood Medicine |
| spelling | doaj.art-3ec2106fc10d43b992e117370d84afee2022-12-21T22:40:34ZengDove Medical PressJournal of Blood Medicine1179-27362021-10-01Volume 1289791169928Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation DisordersValentino LABaker JRButler REscobar MFrick NKarp SKoulianos KLattimore SNugent DPugliese JNRecht MReding MTRice MThibodeaux CBSkinner MLeonard 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 +1 212 328 3700Fax +1 212 328 3777Email lvalentino@hemophilia.orgAbstract: 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, multidisciplinaryhttps://www.dovepress.com/integrated-hemophilia-patient-care-via-a-national-network-of-care-cent-peer-reviewed-fulltext-article-JBMhemophiliacoagulation disordersintegrated carepatient-centered carehealthcare delivery networkmultidisciplinary |
| spellingShingle | Valentino LA Baker JR Butler R Escobar M Frick N Karp S Koulianos K Lattimore S Nugent D Pugliese JN Recht M Reding MT Rice M Thibodeaux CB Skinner M Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders Journal of Blood Medicine hemophilia coagulation disorders integrated care patient-centered care healthcare delivery network multidisciplinary |
| title | Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders |
| title_full | Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders |
| title_fullStr | Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders |
| title_full_unstemmed | Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders |
| title_short | Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders |
| title_sort | integrated hemophilia patient care via a national network of care centers in the united states a model for rare coagulation disorders |
| topic | hemophilia coagulation disorders integrated care patient-centered care healthcare delivery network multidisciplinary |
| url | https://www.dovepress.com/integrated-hemophilia-patient-care-via-a-national-network-of-care-cent-peer-reviewed-fulltext-article-JBM |
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