Silver Spring, Md. (June 21, 2017) – With the addition of two newly Pulmonary Hypertension Association (PHA)-accredited health care sites, more U.S. patients have access to care from facilities that have completed a rigorous review process for providing specialized pulmonary hypertension (PH) care.
The University of New Mexico School of Medicine PH Program in New Mexico and Vanderbilt University Medical Center’s Pediatric PH Program in Tennessee have earned PHA’s PH Care Centers (PHCC) Center of Comprehensive Care (CCC) accreditation. Since the accreditation program launched in 2014, 52 programs in 28 states have received the PHCC accreditation. The total includes 42 adult CCCs, 7 pediatric CCCs and three adult Regional Clinical Programs (RCP).
PH, a progressive, life-threatening, debilitating disease, is high blood pressure of the lungs due to narrowing of the pulmonary arteries. It forces the right side of the heart to pump so hard to move blood into the lungs that it can lead to heart failure. Symptoms are non-specific and include shortness of breath, fatigue and chest pain. Because patients go months, sometimes years, believing they have something other than PH, most patients are ultimately diagnosed with an advanced form of the disease. But early and accurate diagnosis, quality care and appropriate PAH treatments can extend and improve the quality of life for many patients.
PHA launched the PHCC accreditation program to provide increased access for PH patients to high-quality care. The program also aims to foster collaboration between accredited regional treatment sites and larger, comprehensive PH care centers. PHA encourages all accredited sites to participate in the program’s PHA Registry (PHAR). The PHAR is a multi-center, prospective, observational registry of newly evaluated patients diagnosed at accredited centers in the U.S. with PAH or chronic thromboembolic pulmonary hypertension (CTEPH), two forms of PH for which targeted treatments are available that can extend and improve patients’ lives. PHAR-participating centers collect baseline information when a patient is initially evaluated and follow-up data at approximately six-month intervals. The primary goal of the PHAR is to measure and improve quality of care — including assessing differences in centers’ adherence to evidence-based guidelines and establishing benchmarks for health outcomes — and to begin to learn relationships between adherence to expert recommended care strategies and patient outcomes.
The PHAR 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 understand important information about their own patient populations and care practices. As of May 2017, 21 accredited sites are participating in the PHAR and have already enrolled 287 patients.
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension 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 www.facebook.com/PulmonaryHypertensionAssociation.