In a recent report published in the Journal of Blood Medicine, Leonard A Valentino, MD, of the National Hemophilia Foundation in New York, New York, and colleagues provided a review of hemophilia treatment centers (HTCs) in the US.
Dr Valentino and colleagues noted that a comprehensive report of the HTC network in the US had not been published since 2005 and that, in the meantime, many shifts in the care of coagulation disorders have occurred. Prophylaxis has assumed a greater level of acceptance as a standard of care in severe hemophilia, and the demographics of patients served by HTCs have expanded over the years. Newer organizations like the American Thrombosis and Hemostasis Network have also emerged, and innovations in information technology and telemedicine have taken root.
The HTC model is based on integrated care for persons with hemophilia and other congenital coagulation disorders. A core team is involved, which includes a hematologist/medical director, nurse coordinator, physical therapist, and a social worker. A specialized coagulation laboratory is also available. The extended health care team includes many other professionals involved in patient care, in addition to staff involved in research activities.
Expertise in congenital coagulation disorders and training are also components of the HTC, in addition to adherence to clinical practice guidelines developed by the National Hemophilia Foundation and McMaster University in Hamilton, Ontario. These guidelines are reportedly consistent with those set forth by the Medical and Scientific Advisory Council of the National Hemophilia Foundation and the World Federation of Hemophilia Guidelines for the Management of Hemophilia.
A national network of 149 HTCs operates in the United States, according to Dr Valentino and colleagues. The network aids in operation and administration of HTCs, as well as in providing education and training.
The HTC aids in safety and surveillance for persons with hemophilia to reduce serious adverse events associated with the condition or its treatment. In the HTC model, Dr Valentino and colleagues explained that the patient is regarded as a partner in care, with opportunities for shared decision-making and a focus on self-sufficiency. HTCs can help support the patient throughout his or her lifespan. Clinical trial involvement may also be available to a patient through the HTC.
Assessments of patient satisfaction, according to Dr Valentino and colleagues, suggest that more than 90% of patients at HTCs nationally are at least usually satisfied with HTC care. Assessments also revealed some areas of possible improvement, such as with dietary and age-related advice, barriers experienced by minority patients, and others. The HTC model is reportedly associated with cost savings to patients with hemophilia and to payers.
“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,” Dr Valentino and colleagues wrote in their report.
Disclosures: Some authors have declared affiliations with or received grant support from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.
Valentino LA, Baker JR, Butler R, et al. 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;12:897-911. doi:10.2147/JBM.S325031