Coalition for Pulmonary Fibrosis Announces Publication of New Educational Tools for Patients

Preliminary Results From Latest Research Initiative Demonstrate Need for Lung

Transplant and Pulmonary Rehabilitation Education for IPF Patients and


Sep 17, 2004, 01:00 ET from Coalition for Pulmonary Fibrosis

    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
     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 , or by visiting .
     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 or call (888) 222-8541.

SOURCE Coalition for Pulmonary Fibrosis