New Pulmonary Hypertension Association Accreditation Program and Registry Giving New Understanding to Specialists Caring for People Living with Pulmonary Hypertension

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New Pulmonary Hypertension Association Accreditation Program and Registry Giving New Understanding to Specialists Caring for People Living with Rare, Often Misdiagnosed Life-threatening Breathing Disease

Two years after the launch of the world’s first accreditation program for pulmonary hypertension (PH) care centers, specialists are gaining new understanding about how to care for their patients who are living with the too-often misdiagnosed deadly disease. The Pulmonary Hypertension Association (PHA) established the accreditation program to raise the overall quality of care and improve long-term outcomes for PH patients.

PH is increased pressure in the blood vessels of the lungs that can lead to death from right heart failure. Common symptoms are non-specific and include shortness of breath, fatigue and chest pain. Consequently, this progressive disease is often misdiagnosed—for example, as asthma—which leads to delays in proper diagnosis and treatment, costing patients valuable time.

Since establishing the Pulmonary Hypertension Care Center (PHCC) accreditation program in September 2014, PHA has designated 41 adult and six pediatric sites as Comprehensive Care Centers (CCCs), accredited facilities that provide advanced quality care for PH patients. In September 2015, the accreditation program instituted the PHA Registry (PHAR) to measure improvements in the quality of PH patient care. The first 16 CCCs to participate in the PHAR have already enrolled nearly 200 patients providing in a short time useful input on ways to enhance care for PH patients. PHAR sites collect and enter patient-reported outcomes, including two health-related quality-of-life surveys, as well as data such as their exact diagnosis and hospitalization rates. Two abstracts based on information from the registry are scheduled for presentation at the American Thoracic Society meeting in May 2017, with all PHAR site investigators whose data are included listed as abstract authors.

PHCC accreditation is based on meeting key measures of care for PH patients. These measures include a center’s adherence to expert consensus guidelines for the diagnosis and treatment of PH, the scope of PH-related services provided at the center and the expertise of the center's PH care team members. These accreditation criteria were developed by representatives of PHA’s Scientific Leadership Council (SLC) and other PH clinicians, with input from the PH patient community at large.

“PH is complex and can exist alone or in association with a number of other serious illnesses from heart disease to scleroderma,” said PHA/PHCC CEO Brad A. Wong. “As our new accreditation program grows, more people living with PH are receiving appropriate diagnosis and treatment that can extend and improve their lives. Simultaneously, the new registry is collecting and tracking data that will help clinicians advance PH care as they learn more about treating the rare disease.”

The PHAR is a multi-center, prospective, observational registry of newly evaluated patients diagnosed at accredited centers in the United States with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH), two forms of PH for which targeted treatments are available that can extend and improve patients’ lives. The 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 determine the relationship of expert recommended care strategies and patient outcomes. The PHAR gives participating 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 is able to access real-time data, enabling the center to compare its performance to others in the registry.

PHAR participation is open to any accredited PHCC that wishes to enroll patients diagnosed with PAH or CTEPH. PHAR centers are able to author scientific manuscripts using registry data; access their own raw data and real-time center-level summary information for national benchmarking; compare real-time statistics on their center to PHAR averages; and use the registry for local quality improvement initiatives.

Ten additional accredited CCCs are in the start-up phase for joining the current 16 registry-participating sites. In addition, PHA will soon begin accrediting Regional Clinical Programs (RCPs) as part of the PHCC network and offering them an opportunity to participate in the PHAR. RCPs are care providers that are qualified to correctly diagnose and initiate first-line treatment in PH patients, sometimes collaboratively managing more complex patients with accredited CCCs.

PHA Accreditation Program and Registry (as of Feb. 2, 2017)
PHAR-Participating Accredited Centers with Primary Investigators & Research Coordinators (16)

Arizona Pulmonary Specialists, LTD
Jeremy Feldman, MD (PI)
Aimee Sanchez, RN (CRC)
Marcy Turner, RN (CRC)

Columbia University-New York Presbyterian Hospital
Erika Berman Rosenzweig, MD (PI)
Jane Devereux, RN (CRC)

Cottage Health System
Jeffrey S. Sager, MD, MSCE (PI)
Laura Isaacs (CRC)
Keri Djupstrom, RN (CRC)

Inova Fairfax Hospital
Oksana Shlobin, MD (PI)
Stephanie Garofalo, RN, BSN (CRC)

Kentuckiana Pulmonary Associates
Edwinia Battle, RN (CRC)
John Wesley McConnell, MD (PI)
Martha Royse (CRC)

Mayo Clinic (Rochester)
Robert P. Frantz, MD (PI)
Lisa Block (CRC)

Rhode Island Hospital - Brown University
James Klinger, MD (PI)
Corey Ventetuolo, MD (PI)
Amy Palmisciano, RN, BSN (CRC)

Stanford University
Roham T. Zamanian, MD (PI)
Val Scott, RN, MSN (CRC)
Patricia Del Rosario, BSN, RN (CRC)

UCSF Benioff Children's Hospital at UCSF Medical Center
Jeffrey Fineman, MD (PI)
Claire Parker, PNP (CRC)

University of California, at San Francisco Medical Center
Teresa De Marco, MD (PI)
Nimi Tarango, RN, MSN, GNP-C (CRC)

University of Cincinnati
Jean Elwing, MD (PI)
Autumn Studer (CRC)

University of Colorado Denver | Anschutz Medical Campus
David Badesch, MD (PI)
Todd Bull (PI)
Holly del Junco, BA, CCRP (CRC)

University of North Carolina at Chapel Hill
H. James Ford, MD (PI)
Dakota Buhrman (CRC)

University of Pennsylvania
Steven M. Kawut, MD, MS (PI)
Di Pinder, BS (CRC)
Kate Boyle, BS (CRC)

Virginia Commonwealth University
Dan Grinnan, MD (PI)
Laura Savage, RN, MSN, PCCN (CRC)

Washington University at Barnes-Jewish Hospital
Murali M. Chakinala, MD (PI)
Ellen Newton-Lovato RN, BSN, CCRC (CRC)

All PHCC Accredited Programs (47)

Allegheny Health Network
Arizona Pulmonary Specialists, LTD
Aurora St. Luke's Medical Center
Bluhm Cardiovascular Institute at Northwestern University
Brigham and Women's Hospital
Children's Hospital Colorado
Children's Hospital of Wisconsin, Medical College of Wisconsin
Columbia University-New York Presbyterian Hospital (Adult)
Columbia University-New York Presbyterian Hospital (Pediatric)
Cottage Health System
Froedtert Hospital and Medical College of Wisconsin
Houston Methodist Hospital
Inova Fairfax Hospital
Johns Hopkins University
Kentuckiana Pulmonary Associates
Mayo Clinic (Rochester)
Mayo Clinic Florida
Rhode Island Hospital - Brown University
Seattle Children's Hospital
Stanford University
Texas Children’s Hospital
The Oregon Clinic
The University of Kansas Hospital
UC Davis Health System
UCSF Benioff Children's Hospital at UCSF Medical Center
University Medical Center New Orleans
University of California, at San Francisco Medical Center
University of Chicago
University of Cincinnati
University of Colorado Denver | Anschutz Medical Campus
University of Iowa
University of Maryland
University of Michigan
University of Minnesota Health
University of North Carolina at Chapel Hill
University of Pennsylvania (Perelman Center for Advanced Medicine at the Hospital of the
University of Pennsylvania and Harron Lung Center)
University of Pittsburgh Medical Center
University of Rochester Medical Center
University of Texas Southwestern Medical Center
University of Utah
University of Washington
University of Wisconsin Hospital and Clinics
Vanderbilt Medical Center
Virginia Commonwealth University
Washington University and Barnes-Jewish Hospital
Weill Cornell Medical Center-New York Presbyterian Hospital
Yale University School of Medicine

About the Pulmonary Hypertension Association:
Headquartered in Silver Spring, Md., the Pulmonary Hypertension Association (PHA) is
the country’s leading pulmonary hypertension organization. Commemorating its 25th
anniversary in 2016, 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;
healthcare professionals and researchers. For more information and to learn how you
can support PH patients, visit http://www.PHAssociation.org and connect with PHA on Twitter
@PHAssociation and on Facebook at http://www.facebook.com/PulmonaryHypertensionAssociation.

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Kelly Williams
@PHAssociation
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