In its nearly 25 years, PHA’s work has led to significant advances in PH care, including the availability of 12 FDA-approved treatments. However, the association continues to fight for earlier and more accurate diagnosis.
Silver Spring, Md. (PRWEB) June 08, 2015
With its announcement of nine more centers receiving Pulmonary Hypertension Care Center (PHCC) accreditation bringing the total to 26, the Pulmonary Hypertension Association (PHA) is hopeful as it seeks to improve overall care and outcomes for people with pulmonary hypertension (PH). PH, specifically pulmonary arterial hypertension (PAH), is a rare and debilitating disease of the lungs that affects the functioning of the heart and can lead to right heart failure.
In its nearly 25 years, PHA’s work has led to significant advances in PH care, including the availability of 12 FDA-approved treatments. However, the association continues to fight for earlier and more accurate diagnosis. 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. Without treatment, the average survival rate is less than three years. In addition, many patients are hospitalized due to PH complications and some require transplantation if therapies do not work.
PHCC accreditation means a program demonstrates a dedication to making a proper diagnosis. It also means a program has the capacity to appropriately and comprehensively manage PH patients through a set of criteria established by the PHA’s Scientific Leadership Council and the PHCC Oversight Committee. The committee is comprised of members that are global leaders in the field of pulmonary hypertension.
Accreditation criteria reflect input from physicians, allied healthcare professionals, patients and PHA leadership. There are two types of accreditation: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Interested centers can now apply online through the PH Care Centers Site Application Portal.
The nine newly accredited PHCCs are:
1) Froedtert and Medical College of Wisconsin Pulmonary Hypertension Service at Froedtert Hospital and the Medical College of Wisconsin – Milwaukee, Wis.
2) Johns Hopkins Pulmonary Hypertension Program at Johns Hopkins University – Baltimore, Md.
3) University of California, San Francisco (UCSF) Pulmonary Hypertension Program at the University of California, at San Francisco Medical Center—San Francisco, Calif.
4) UCSF Pediatric Pulmonary Hypertension Program at UCSF Benioff Children’s Hospital at UCSF Medical Center – San Francisco, Calif.
5) Pulmonary Hypertension Clinical Program at Mayo Clinic Florida, Jacksonville, Fla.
6) Pulmonary Hypertension Program at the University of Iowa, Heart and Vascular Center – Iowa City, Iowa
7) The University of Kansas Pulmonary Hypertension Program at The University of Kansas Hospital – Kansas City, Kan.
8) University of North Carolina Pulmonary Hypertension Program at the University of North Carolina at Chapel Hill/UNC Hospitals – Chapel Hill, N.C.
9) Pulmonary Vascular Disease Program, Center for Pulmonary Heart Disease, Brigham and Women’s Hospital, and Harvard Medical School – Boston, Mass.
A PH patient registry is being developed and accredited PH Care Centers will contribute to it, tracking diagnostic and treatment patterns at a national level, ultimately demonstrating quality improvement for the care of PH patients. Linking PHCCs through a national network will increase collaboration in the PH community, through clinical, quality improvement and investigative partnerships.
For more information on PHCC, go to: PHCareCenters.org or email PHCC(at)PHAssociation(dot)org .
About the Pulmonary Hypertension Association
Headquartered in Silver Spring, Md., with a growing list of chapters across the country, the Pulmonary Hypertension Association (PHA) is the country’s leading pulmonary hypertension organization. Its mission is to find ways to prevent and cure pulmonary hypertension and provide hope for the community through support, education, research, advocacy and awareness. PHA does this by connecting and working together with the entire PH community of patients, families and medical professionals. PHA relies on donations to fund its many programs, including early diagnosis efforts, more than 245 support groups around the country and continuing education for medical professionals through PHA Online University. For more information or to support PHA with a donation go to PHAssociation.org.