Nov 16, 2021

For more than 40 years, the hemophilia treatment center (HTC), the U.S. HTC Network (USHTCN), and its model of integrated, patient-centered care has been essential in helping people with hemophilia (PWH) achieve optimal health outcomes.

Authors of a new paper posit that while the value of these specialized centers is well understood by central stakeholders, purchasers of health insurance and the broader medical community may not be privy to the full breadth and scope of the USHTCN, its intricate and deliberate structure, and its adeptness at meeting the physical, psychosocial, emotional needs of its patients.

The paper, “ Integrated Hemophilia Patient Care via a National Network of Care Centers in the United States: A Model for Rare Coagulation Disorders,” was published in the Journal of Blood Medicine (JBM). It lays out the key components of the integrated care model, the structural underpinnings of the USHTCN, and the myriad of benefits to patients.

The authors describe HTCs functioning as highly coordinated, multidisciplinary teams within an evolving national network, uniquely positioned to deliver holistic care to an expanding patient population. Over time, this patient population has grown to encompass von Willebrand disease, rare factor deficiencies, and underserved groups including women and girls with inheritable bleeding disorders.

The authors define the fundamental staffing components at the core of every federally funded HTC, including a hematologist, registered nurse, physical therapist, and social worker, plus key extended multidisciplinary team members such as genetic counselors, orthopedic surgeons, oral surgeons/dentists, nutritionists, and other providers.

The paper also provides an accounting of the critical services and dynamic coordinating capacity of HTCs within a regional and national framework. The benefits of such an integrated system are vast, and include timely specialty laboratory services, coordinated pharmacy services, robust data collection, adherence to clinical guidelines, standards of care and consistent provider education/training opportunities. These and other aspects of integrated care have a profound, real-world impact on patients.

“These services ensure that PWH and other congenital coagulation disorders have access to highly specialized care to reduce morbidity and enhance wellness, promote a longer lifespan, and improve patient/family functioning; while at the same time reducing avoidable emergency room visits, hospitalizations, and overall costs.”

The positive impact of these and other services on patients at HTCs are captured via periodic national patient satisfaction surveys with the topline results included in this paper.

The authors also explain the current funding mechanisms that support HTCs, and the associated challenges, including  fair and optimal reimbursement for services and patient access to the USHTCN.

Readers of this article will walk away with a strong sense of HTCs and the USHTCN as the cornerstone of optimal care for patients with inheritable bleeding disorders.

“Herein, we have described what HTCs do and how they do it through a team-based, multidisciplinary approach that incorporates the affected person in shared decision making. We have shown that PWH/caregivers are highly satisfied and have presented evidence for why this model of care has been and will remain the gold standard in the United States,” conclude the authors.

“This article can serve as a reference document for all stakeholders in the care of PWH and other rare coagulation disorders Taking all the benefits into account, we believe that purchasers of health care will conclude, as we do, that HTCs provide the highest-quality care for their beneficiaries, delivering optimal health outcomes at the lowest total cost of care.”

The paper, which was published online by JBM on October 21, 2021, is open access – Follow this link to read the full article.

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. J Blood Med. 2021 Oct 21;12:897
911. doi: 10.2147/JBM.S325031. PMID: 34707421; PMCID: PMC8544265.

Disclaimer: NHF provides periodic synopses of articles published in peer reviewed journals, the purpose of which is to highlight papers that cover a wide range of topics and speak to a broad spectrum of the inherited blood disorders community. Topics include shared decision making, gene therapy, health equity, and more. NHF hopes you find this content to be informative and engaging.

Any questions about the articles featured here should be directed to the publishing journal and/or the study authors. This content is for general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.