SAN JOSE, Calif., March 21, 2007 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today announced a summary manuscript from its Basic Research Questionnaire, considered one of the largest databases of information on patients suffering from idiopathic pulmonary fibrosis (IPF) in the United States, was published in Respiratory Medicine. The publication is an internationally-renowned, peer-reviewed journal devoted to the rapid publication of clinically-relevant respiratory medicine research. This manuscript represents the first large-scale survey of patient experiences and perceptions regarding the diagnosis and treatment of IPF published to date.
The paper, entitled "Patient Experiences with Pulmonary Fibrosis," was authored by Harold Collard, M.D. (University of California, San Francisco), Marvin Schwarz, M.D. (University of Colorado Health Sciences Center), Gregory Tino, M.D. (University of Pennsylvania Medical Center), Paul Noble, M.D. (Duke University Medical Center), Mark Shreve (CPF), and Maureen Michaels and Bruce Carlson (Michaels Opinion Research, Inc.).
The manuscript has been published ahead of print and is available on PubNet, or by visiting the CPF Web page at http://www.coalitionforpf.org/Healthcare/resources.asp . The manuscript is cited as: Collard HR, et al. Patient experiences with pulmonary fibrosis. Respir Med (2006), doi:10.1016/j.rmed.2006.10.002.
The manuscript focuses on the issues of patient education and resources. A survey of 52 defined-choice and open-ended questions regarding the diagnosis and management of pulmonary fibrosis was delivered. Two-thirds of the total 1,448 respondents reported a clear lack of information and resources on pulmonary fibrosis at the time of diagnosis. Less tha n half of respondents reported they felt well-informed about treatment options, the role of supplemental oxygen, pulmonary rehabilitation and transplantation. These results suggest there remains a substantial need for improved patient education regarding the diagnosis and management of pulmonary fibrosis.
"Representing the viewpoint of the patients we serve, and delivering programs and services to meet their needs, remains central to our mission," said Mark A. Shreve, chief executive officer of the CPF. "This research clearly shows that we can all be doing more to help IPF patients and their families."
Overall, more than 2,000 patients and families have completed the Basic Research Questionnaire. It is managed by Michaels Opinion Research, Inc. ( http://www.michealsresearch.com ), an independent research firm based in New York.
Funding for this program is provided through private gifts from the DuBrul Family Fund and from Helen and Michael Galvin in memory of their family members who have passed away from IPF.
About Idiopathic Pulmonary Fibrosis (IPF)
IPF is a lung disorder characterized by a progressive scarring -- known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from IPF, which is the most prevalent of a classification of lung disorders known as interstitial lung diseases (ILD's). There is currently no known cause or cure for IPF, nor is there an FDA-approved treatment. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose, and an estimated two- thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF ), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. For more information please visit http://www.coalitionforpf.org or call (888) 222-8541.
CONTACT: Teresa R. Geiger, Coalition for Pulmonary Fibrosis,+1-303-521-4080, firstname.lastname@example.org
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