SILVER SPRING, MD (October 3, 2018) – 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 stiffened, 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 Pulmonary Hypertension Clinic at Baylor Scott & White The Heart Hospital – Plano in Plano, Texas, is the most recently PHCC-accredited program; it has been accredited as a Regional Clinical Program (RCP). In total, 60 programs have earned PHCC accreditation: 55 Centers of Comprehensive Care (CCCs) comprised of 47 adult and eight pediatric CCCs, and five RCPs.
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 September 2018, 39 accredited programs are participating in the PHAR and have enrolled more than 670 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/.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension (PH) organization. PHA’s mission is to extend and improve the lives of those affected by PH; its vision is a world without PH, empowered by hope. PHA achieves this by connecting and working together with the entire PH community of patients, families, health care professionals and researchers. For more information and to learn how you can support PH patients, visit www.PHAssociation.org and connect with PHA on Twitter and Instagram @PHAssociation and on Facebook at facebook.com/PulmonaryHypertensionAssociation.