SAN JOSE, Calif., Sept. 17 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today the publication of two new educational brochures: 'Lung Transplantation: What Every Patient with Idiopathic Pulmonary Fibrosis Should Know' and 'Oxygen Management and Pulmonary Rehabilitation for the IPF Patient'. The two brochures were created for patients, family members and physicians alike based on preliminary results of the CPF's Basic Research Questionnaire, an education initiative launched last year to better understand the impact of idiopathic pulmonary fibrosis (IPF) on patients and families, and to help the foundation grasp the educational needs that arise for those fighting the disease. To date, the CPF has received more than 1,400 responses to this ground-breaking survey, and based on educational gaps identified by patients, discovered the need for improved education and awareness on two very important topics for IPF patients; lung transplantation and pulmonary rehabilitation. Interim results of the CPF's research questionnaire found that among current patients, 30 percent responded that their physician has not discussed, or even mentioned the topic of lung transplantation, a potential treatment option for IPF patients under 65. Of those patients under the age of 60, fewer than half (47 percent) said they have been advised to seek a lung transplant. Additional data from a Duke University study also indicates that more than 50 percent of those with IPF who are on transplant lists will pass away before a donor lung becomes available. "We hope that as a result of this educational effort, patients will be empowered to discuss lung transplantation as a potential treatment option for IPF early in their treatment, if not immediately upon diagnosis," said Marvin I. Schwarz, M.D., Chairman of the CPF and James C. Campbell Professor of Medicine at the University of Colorado Health Sciences Center in Denver, Colo. With regard to pulmonary rehabilitation and oxygen management for IPF patients, the interim results of the Basic Research Questionnaire also found that while 63 percent of patients are currently prescribed supplemental oxygen as a treatment, only about one-third (37 percent) of all current patients have ever participated in a pulmonary rehabilitation program or received respiratory therapy (32 percent). 'Oxygen Management and Pulmonary Rehabilitation for the IPF Patient' encourages participation in pulmonary rehabilitation programs, and seeks to improve patient education of the role that pulmonary rehabilitation and oxygen management have in treating IPF. Copies of the brochures are available by contacting the CPF at 888-222-8541, by email at firstname.lastname@example.org , or by visiting http://www.coalitionforpf.org/AboutUs/offerings.asp . About Idiopathic Pulmonary Fibrosis 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 83,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 31,000 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 CPF Basic Research Questionnaire The CPF's Basic Research Questionnaire is an important first step toward gathering information that does not currently exist about the experience of living with IPF. Research findings are based on responses from pulmonary fibrosis patients or their family members and caregivers. As a result, reliability of patient recall on issues related to specific diagnoses or diagnostic tests, for instance, limits the degree to which data can be used to accurately evaluate provider compliance with diagnostic guidelines. Results are indicative, rather than definitive. The CPF's Basic Research Questionnaire is managed by Michaels Opinion Research, Inc., an independent research firm with expertise in healthcare issues. Funding for this program is provided through grants from the DuBrul Family Fund and from Helen and Michael Galvin in memory of the five Galvin family members who have passed away from IPF. About the Coalition for Pulmonary Fibrosis The Coalition for Pulmonary Fibrosis (CPF) is a 501 (c) (3) nonprofit organization, founded in 2001 to further education, patient support and research efforts for pulmonary fibrosis, specifically idiopathic pulmonary fibrosis (IPF). The CPF is governed by the nation's leading pulmonologists, individuals affected by pulmonary fibrosis, medical research professionals and advocacy organizations. The CPF's nonprofit partners include the Mary D. Harris Memorial Foundation, The Pulmonary Paper, the Caring Voice Coalition, Second Wind Lung Transplant Association, the National Coalition of Autoimmune Patient Groups, and more than 30 leading IPF treatment and research centers nationwide. For more information on CPF, please visit http://www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis