The Pulmonary Hypertension Association has accredited its first six Pulmonary Hypertension Care Centers (PHCC) in a program that seeks to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension (PH), specifically pulmonary arterial hypertension (PAH) — a rare and debilitating disease of the lungs that affects the functioning of the heart and can lead to right heart failure. Without treatment, mean survivability is only 2.8 years.
Despite medical advances, the median time from onset of symptoms to PAH diagnosis is still 1.1 years, and many patients will see three or more different physicians over this period before they are properly diagnosed. Despite the availability and success of PAH-targeted therapeutic options over the past twenty years, there are still shortcomings with the diagnosis and management of PAH. Even with available medical therapies, long-term outcomes are not optimal as many patients do not survive PH, require transplantation or hospitalization.
“The PHCC will give PH patients security in knowing they are receiving quality care from the experts in the field,” said Dr. Murali Chakinala, from the Washington University School of Medicine and PHCC Committee Chair. “Patients can feel confident that the PHCCs have been vetted by a rigorous process that includes a detailed application and a comprehensive site visit with ultimate adjudication by a Committee of more than 20 health professionals with vast experience in caring for PH patients.”
PHAs Scientific Leadership Council and the PHCC Oversight Committee set high parameters for PHCC accreditation. PHCC accreditation signifies that a PH program has demonstrated a dedication to making proper diagnosis and capacity to appropriately and comprehensively manage PH patients through a set of criteria established by the PHA Scientific Leadership Council — 28 global leaders in the field of pulmonary hypertension. These criteria have also been developed with input from many PH stakeholders including physicians, allied health care professionals, patients and PHA leadership and are considered essential to delivering high-quality care for these complex patients.
Six Centers have now received full accreditation:
Inova Advanced Lung Disease and Transplant Program, Inova Fairfax Hospital, Fairfax, Va.
Penn Pulmonary Hypertension / Pulmonary Vascular Disease Program, University of Pennsylvania Health System and Perelman School of Medicine, Philadelphia, Pa.
Kentuckiana Pulmonary Associates, Louisville, Ky.
UC Health Pulmonary Hypertension Program, University of Cincinnati, Cincinnati, Ohio.
Cottage Pulmonary Hypertension Center, Cottage Health System, Santa Barbara, Calif.
Stanford Pulmonary Hypertension Program, Stanford University, Stanford, Calif.
Accredited PH Care Centers will also contribute to a PH patient registry that will track diagnostic and treatment patterns at a national level, ultimately demonstrating quality improvement for the care of PH patients.
“The PH patient registry will provide important data on the care and outcomes of patients with pulmonary hypertension across the country,” said Dr. Steven Kawut of the Perelman School of Medicine at the University of Pennsylvania. “We can then begin to understand best practices in the treatment of PH and continue to improve the quality of life and survival of individuals with this disease.”
Linking Centers through a national network will increase collaboration in the PH community, through clinical, quality improvement and investigative partnerships.