Evidence makes the case for adoption of a new hemophilia guideline.
“No one can whistle a symphony. It takes a whole orchestra to play it.” Sage words from Halford Edward Luccock (1885-1961), once a professor of religion in Yale’s divinity program, were likely intended to spur a congregation into a charitable undertaking.
Yet the sentiment also resonates when applied to healthcare. Keeping to Luccock’s analogy, consider the conductor to be a physician directing a patient’s care plan, each section of the orchestra a different area of care, each instrument a different type of care provider, and the resulting rising harmonies a crescendo of positive patient outcomes.
Targeted teamwork has proven itself essential to the continuum of care for patients. And now a specific call for integrated care has been issued in a new guideline created to inform the treatment of hemophilia.
New Guideline Calls for Integrated Care
The new hemophilia care guideline was developed jointly by the National Hemophilia Foundation (NHF) and McMaster University in Ontario, Canada. The guideline recommends an integrated care model be used over non-integrated models for people with hemophilia, as well as for those with inhibitors and at high risk for inhibitor development. It specifically suggests the integrated care should involve a hematologist, a specialized hematology nurse, a physical therapist, a social worker and round-the-clock access to a specialized hematology lab.1
“The lifelong education leads to better self-directed care and leverages preventive care, leading to improved outcomes.” -Steven W. Pipe, MD
According to information provided by McMaster University, the guideline also has recommendations “to advise NHF and the broader hemophilia community in setting research priorities to expand the evidence base of the guideline’s recommendations, including further studies in: geriatric populations; populations with poor access to care; and people with hemophilia who access care outside of hemophilia treatment centers.”
The new guideline has already found industry support having been published in the journal Hemophilia, accepted for inclusion in the National Guideline Clearing House, and endorsed by the World Federation of Hemophilia, the American Society of Hematology, and the International Society for Thrombosis and Haemostasis.
Touted as a roadmap to providing optimal care for people with hemophilia, the guideline was developed according to evidence-based principles, said Steven W. Pipe, MD, of the University of Michigan School of Medicine in Ann Arbor, and coauthor of the guideline with Craig M. Kessler, MD, of Georgetown University in Washington, DC.
Pipe, a professor of pediatrics and pathology, told ADVANCE, “The integrated care model provides a unique care model that is not recapitulated within an isolated specialist-care model.” He expects the integrated care model to promote greater coordination of care delivery and to reduce variations in practice across the U.S.
Better Patient Outcomes Expected
Asked how the new guideline would impact patients, Pipe explained that they would mimic the level of care available through hemophilia treatment centers (HTCs) which were developed and funded following earlier CDC recognition that individuals with bleeding disorders had difficulty obtaining quality care due to the rarity and complexity of their disease.
“Funding led to the development of centers of excellence, designated as hemophilia treatment centers, which focused on the provision of individualized treatment plans, preventative care and education,” Pipe wrote in guideline commentary. “They espoused the common goal of maximizing coordination, effectiveness, and efficiency in care delivery. The core HTC team has traditionally included a hematologist, specialized hemophilia nurse, physical therapist, and social worker. This guideline also identifies access to a specialized coagulation laboratory to be a critical element to support the integrated care team. However, beyond this core group, other care providers (e.g., dental professionals, genetic counselors, orthopedists, infectious disease specialists, etc.) are either available on-site or via established partnerships.”
Pipe said the effectiveness of the HTC model has been well documented through studies, such as the CDC’s Hemophilia Surveillance Study in 1995, utilizing data sources from the HTCs, the CDC, and state health departments in 6 states that identified all patients within these states with hemophilia, including those treated outside of an HTC.2
“The study documented a 40% decrease in mortality among patients treated at HTCs, which was particularly notable given that HTCs provided care to a higher proportion of severely affected patients and patients with complications including inhibitors, liver disease, and HIV/AIDS as compared to hemophilia patients managed in non-HTC settings. Among the 2,950 patients followed over 3 years, the relative mortality rate increased by 70% and the relative hospitalization rate increased by 40% for patients who received care outside of the HTC network,”Pipe explained.
Pipe also noted that the level of care called for in the guideline would help avoid gaps to care that now exist. “It could be as simple as the family having the confidence to call the center for advice, for example after an injury, knowing that they could speak to a nurse specialist to receive key management advice,” Pipe explained.
“If needed the physician would be engaged. If there was a rehab assessment or plan needed, the physical therapist would be engaged,” he continued. “These people are immediately able to offer their advice because they already know the patient from prior comprehensive visit encounters. During those comprehensive visits, they are also providing anticipatory guidance that will aid the family with the next health challenge (the next injury). It’s a continual feedback loop between the patient, their caregivers and the integrated care team—when they are well and when they need targeted interventions. No time is lost with referrals. The family sees everyone at a single visit. The lifelong education leads to better self-directed care and leverages preventive care, leading to improved outcomes.
“The integrated care model provides a unique care model that is not recapitulated within an isolated specialist-care model,” Pipe stressed. It is indeed a complex composition of providership that promotes the best rhythms of care.
- Pipe SW, Kessler CM. Evidence-based guidelines support integrated disease management as the optimal model of haemophilia care. Haemophilia. 2016. 22;1365-251.
- Hemophilia Surveillance System project investigators, et a. Mortality among males with hemophilia: relations with source medical care. Blood. 2000. 96 (2);437-442.