PHA Accreditation Program Assures Access to Specialized Care for Thousands With Often-Misdiagnosed Deadly Lung Disease
A national accreditation program launched by the Pulmonary Hypertension Association (PHA) assures that more than 12,000 people with a life-threatening lung disease are getting care from clinicians who specialize in their often-misdiagnosed condition.
Pulmonary hypertension (PH), also known as high blood pressure of the lungs, affects adults and children of all ages and ethnic backgrounds. It can result from the arteries in the lungs becoming damaged, narrowed or stiffed, forcing the right side of the heart to pump extra hard, leading to right heart failure and death. Heart disease, connective tissue disorders, pulmonary emboli and many other common and rare conditions can put people at risk for developing the disease. Symptoms of PH are non-specific and include shortness of breath, fatigue and chest pain. Consequently, people with the disease can go months, sometimes years, believing they have other less life-threatening illnesses, such as asthma.
PHA rolled out its Pulmonary Hypertension Care Centers (PHCC) accreditation program in 2014 to improve the quality of care and outcomes for people with PH. The PH programs at Ochsner Medical Center in Jefferson, La., UCSF Fresno Community Regional Medical Center in Fresno, Calif., and University of Virginia Health Systems in Charlottesville, Va., are the most recently PHCC-accredited programs. They are among 54 (46 adult and eight pediatric centers) that have earned the PHCC program’s Center of Comprehensive Care (CCC) accreditation. Another three clinics have earned PHCC accreditation with Regional Clinical Program (RCP) designation.
Early and accurate diagnosis, quality care and appropriate targeted treatments available for two forms of PH — pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) — can extend and improve the quality of life for many living with the disease. PHA encourages all PHCC centers to participate in and help build the PHA registry (PHAR) of newly evaluated PAH and CTEPH patients diagnosed at accredited centers in the U.S. The primary goals of the PHAR are to measure and improve quality of care and adherence to care guidelines; establish benchmarks for health care outcomes; and provide feedback about the relationships between adherence to expert-recommended care strategies and patient outcomes. Data from the PHAR also carries the potential to help the advancement of better, more targeted treatments for the future.
The PHAR also gives accredited centers a platform to perform their own research and quality improvement initiatives and assess patient-reported outcomes, including health-related quality of life. Each PHAR site can access its own data in real-time, enabling the center to analyze and understand important information about their own patient populations and care practices. As of February 2018, 31 accredited programs are participating in the PHAR and have enrolled more than 480 patients. For a full list of accredited centers or to learn more about PHAR, visit: https://phassociation.org/phcarecenters/accredited-centers/ and https://phassociation.org/PHAR/.
