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Survey Says….Idiopathic Pulmonary Fibrosis Difficult on Patients and Caregivers

FEBRUARY 17, 2015
James Radke

Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive fibrosing interstitial pneumonia that does not have a clear cause. In most cases, the disease is fatal within 2-3 years of initial symptoms and treatment options are limited. Current treatments (until recently) included oxygen therapy, pulmonary rehabilitation, and lung transplant. Last fall, two orphan drugs were approved for IPF, Esbriet (pirfenidone) by Intermune and Ofev (nintedanib) by Boehringer Ingelheim.
 
A new survey called EXPLORE IPF was recently completed in which patients and caregivers were asked about the disease and the burden it has placed on them. The survey was conducted between April 14, 2014 and May 15, 2014 among 100 adult patients with IPF and 100 adult caregivers in the United States. Respondents completed a 15-minute online survey exploring their IPF journeys, retrospectively. The survey was conducted by Taylor Nelson Sofres and sponsored by Boehringer Ingelheim. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates.

Key Findings

Embarrassing symptoms
  • 93% of patients who experienced coughing reported feeling embarrassed because they cannot control it
  • 76% of patients also reported that other people keep their distance because of it
  • 69% of patients who use supplemental oxygen were embarrassed about being seen with their equipment
Diagnostic delays
  • On average, the majority of patients visited approximately two doctors (2-3) over the course of nearly two years (1.9) before receiving a diagnosis
  • 52% of patients reported difficulty finding a doctor knowledgeable about IPF
Caregivers isolated
  • Before their loved ones' diagnoses, more than eight in 10 caregivers reported feeling satisfied with their sense of independence (84%) and social life (85%)
  • After diagnosis, less than four in 10 caregivers reported feeling satisfied with their sense of independence (39%) and social life (38%)
  • 64% of caregivers indicated that they feel isolated because they cannot find other caregivers to connect with
Disease management plan
  • 72% of patients agreed that better disease management can help improve overall well-being in patients living with IPF
  • More than half of patients (53%) and caregivers (55%) indicated that a better understanding of the steps to manage IPF symptoms can help with overall well-being
    • Patients (70%) and caregivers (75%) agreed that greater support and advocacy groups would be helpful
 
John Morthanos, an IPF patient and advocate who is part of the EXPLORE IPF survey Advisory Committee said:
 
"These survey findings remind me of my own experience with IPF.
 
“My wife and I spent years trying to find out what was wrong with me. We were fortunate that after many years of misdiagnosis, even with biopsies reporting fibrosis, that we found doctors who recognized my symptoms as IPF and helped us get the support and guidance we needed. My hope is that these survey results, along with Rare Disease Day on February 28, will help people living with this serious disease and their loved ones feel better understood and supported."

 
Jeffrey Swigris, DO, MS, an associate professor of medicine for the Autoimmune Lung Center and Interstitial Lung Disease Program at National Jewish Health, and EXPLORE IPF survey Advisory Committee member added:
 
"It is important for the medical community to help our patients and their loved ones cope with this terrible disease, especially at the time of diagnosis when there will be many questions. With this survey, we hope to expose some of the intrusive and burdensome effects of IPF on patients' lives and ultimately to help address the needs of this community."
 
Based on the survey results, the advisory committee recommended that the survey results be used to educate the general public as well as healthcare professionals about the early signs of IPF to decreased delays in diagnosis. Further, that more resources and support networks be created to help patients, caregivers, and healthcare professional manage the disease and its many burdens.

The Advisory Committee included:
  • Jeffrey James Swigris, DO, MS, associate professor of medicine, Autoimmune Lung Center and Interstitial Lung Disease Program, National Jewish Health
  • Richard Kradin, MD, pulmonologist and psychiatrist, Pulmonary and Critical Care Unit, Massachusetts General Hospital
  • Dolly Kervitsky, RCP, CCRC, nationally recognized patient advocate
  • Carolyn Spada, RN, BSN, interstitial lung disease nurse coordinator, The Center for Interstitial Lung Disease, University of Washington Medical Center
  • Jennifer Hayes, RN, BSN, interstitial lung disease nurse coordinator, The Center for Interstitial Lung Disease, University of Washington Medical Center
  • John Morthanos, IPF patient and advocate
  • Craig Conoscenti, MD, FCCP, Director, Idiopathic Pulmonary Fibrosis Program Lead, Clinical Development and Medical Affairs, Respiratory, Boehringer Ingelheim Pharmaceuticals, Inc.
  • Dale Baird, Associate Director, Pipeline Market Research, Boehringer Ingelheim Pharmaceuticals, Inc.

Reference

New Survey Uncovers Emotional and Physical Impact of Idiopathic Pulmonary Fibrosis, a Fatal Lung Disease [press release]. http://www.prnewswire.com/news-releases/new-survey-uncovers-emotional-and-physical-impact-of-idiopathic-pulmonary-fibrosis-a-fatal-lung-disease-300033929.html. Published February 12, 02015. Accessed February 18, 2015.
 
 
Image of "Ipf NIH" by National Heart Lung and Blood Institute (NIH) - National Heart Lung and Blood Institute (NIH). Licensed under Public Domain via Wikimedia Commons - <a data-cke-saved-href="http://Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive fibrosing interstitial pneumonia that does not have a clear cause. In most cases, the disease is fatal within 2-3 years of initial symptoms and treatment options are limited. Current treatments (until recently) included oxygen therapy, pulmonary rehabilitation, and lung transplant. Last fall, two orphan drugs were approved for IPF, Esbriet (pirfenidone) by Intermune and Ofev (nintedanib) by Boehringer Ingelheim. A new survey called EXPLORE IPF was recently completed in which patients and caregivers were asked about the disease and the burden it has placed on them. The survey was conducted between April 14, 2014 and May 15, 2014 among 100 adult patients with IPF and 100 adult caregivers in the United States. Respondents completed a 15-minute online survey exploring their IPF journeys, retrospectively. The survey was conducted by Taylor Nelson Sofres and sponsored by Boehringer Ingelheim. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates. The key findings were: Embarrassing symptoms • 93% of patients who experienced coughing reported feeling embarrassed because they cannot control it • 76% of patients also reported that other people keep their distance because of it • 69% of patients who use supplemental oxygen were embarrassed about being seen with their equipment Diagnosis • On average, the majority of patients visited approximately two doctors (2-3) over the course of nearly two years (1.9) before receiving a diagnosis • 52% of patients reported difficulty finding a doctor knowledgeable about IPF Caregivers isolated • Before their loved ones' diagnoses, more than eight in 10 caregivers reported feeling satisfied with their sense of independence (84%) and social life (85%) • After diagnosis, less than four in 10 caregivers reported feeling satisfied with their sense of independence (39%) and social life (38%) • 64% of caregivers indicated that they feel isolated because they cannot find other caregivers to connect with Disease management plan • 72% of patients agreed that better disease management can help improve overall well-being in patients living with IPF • More than half of patients (53%) and caregivers (55%) indicated that a better understanding of the steps to manage IPF symptoms can help with overall well-being o More than seven in 10 patients (70%) and caregivers (75%) agreed that greater support and advocacy groups would be helpful John Morthanos, an IPF patient and advocate who is part of the EXPLORE IPF survey Advisory Committee said: " href="http://Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive fibrosing interstitial pneumonia that does not have a clear cause. In most cases, the disease is fatal within 2-3 years of initial symptoms and treatment options are limited. Current treatments (until recently) included oxygen therapy, pulmonary rehabilitation, and lung transplant. Last fall, two orphan drugs were approved for IPF, Esbriet (pirfenidone) by Intermune and Ofev (nintedanib) by Boehringer Ingelheim. A new survey called EXPLORE IPF was recently completed in which patients and caregivers were asked about the disease and the burden it has placed on them. The survey was conducted between April 14, 2014 and May 15, 2014 among 100 adult patients with IPF and 100 adult caregivers in the United States. Respondents completed a 15-minute online survey exploring their IPF journeys, retrospectively. The survey was conducted by Taylor Nelson Sofres and sponsored by Boehringer Ingelheim. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates. The key findings were: Embarrassing symptoms • 93% of patients who experienced coughing reported feeling embarrassed because they cannot control it • 76% of patients also reported that other people keep their distance because of it • 69% of patients who use supplemental oxygen were embarrassed about being seen with their equipment Diagnosis • On average, the majority of patients visited approximately two doctors (2-3) over the course of nearly two years (1.9) before receiving a diagnosis • 52% of patients reported difficulty finding a doctor knowledgeable about IPF Caregivers isolated • Before their loved ones' diagnoses, more than eight in 10 caregivers reported feeling satisfied with their sense of independence (84%) and social life (85%) • After diagnosis, less than four in 10 caregivers reported feeling satisfied with their sense of independence (39%) and social life (38%) • 64% of caregivers indicated that they feel isolated because they cannot find other caregivers to connect with Disease management plan • 72% of patients agreed that better disease management can help improve overall well-being in patients living with IPF • More than half of patients (53%) and caregivers (55%) indicated that a better understanding of the steps to manage IPF symptoms can help with overall well-being o More than seven in 10 patients (70%) and caregivers (75%) agreed that greater support and advocacy groups would be helpful John Morthanos, an IPF patient and advocate who is part of the EXPLORE IPF survey Advisory Committee said: " these="" survey="" findings="" remind="" me="" of="" my="" own="" experience="" with="" ipf.="" “my="" wife="" and="" i="" spent="" years="" trying="" to="" find="" out="" what="" was="" wrong="" me.="" we="" were="" fortunate="" that="" after="" many="" misdiagnosis,="" even="" biopsies="" reporting="" fibrosis,="" found="" doctors="" who="" recognized="" symptoms="" as="" ipf="" helped="" us="" get="" the="" support="" guidance="" needed.="" hope="" is="" results,="" along="" rare="" disease="" day="" on="" february="" 28,="" will="" help="" people="" living="" this="" serious="" their="" loved="" ones="" feel="" better="" understood="" supported."="" jeffrey="" swigris,="" do,="" ms,="" an="" associate="" professor="" medicine="" for="" autoimmune="" lung="" center="" interstitial="" program="" at="" national="" jewish="" health,="" explore="" advisory="" committee="" member="" added:="" "it="" important="" medical="" community="" our="" patients="" cope="" terrible="" disease,="" especially="" time="" diagnosis="" when="" there="" be="" questions.="" survey,="" expose="" some="" intrusive="" burdensome="" effects="" patients'="" lives="" ultimately="" address="" needs="" community."="" based="" recommended="" results="" used="" educate="" general="" public="" well="" healthcare="" professionals="" about="" early="" signs="" decreased="" delays="" in="" diagnosis.="" further,="" more="" resources="" networks="" created="" patients,="" caregivers,="" professional="" manage="" its="" burdens.="" included:="" •="" james="" medicine,="" program,="" health="" richard="" kradin,="" md,="" pulmonologist="" psychiatrist,="" pulmonary="" critical="" care="" unit,="" massachusetts="" hospital="" dolly="" kervitsky,="" rcp,="" ccrc,="" nationally="" patient="" advocate="" carolyn="" spada,="" rn,="" bsn,="" nurse="" coordinator,="" university="" washington="" jennifer="" hayes,="" john="" morthanos,="" craig="" conoscenti,="" fccp,="" director,="" idiopathic="" fibrosis="" lead,="" clinical="" development="" affairs,="" respiratory,="" boehringer="" ingelheim="" pharmaceuticals,="" inc.="" dale="" baird,="" pipeline="" market="" research,="" reference="" new="" uncovers="" emotional="" physical="" impact="" a="" fatal="" [press="" release].="" http:="" www.prnewswire.com="" news-releases="" new-survey-uncovers-emotional-and-physical-impact-of-idiopathic-pulmonary-fibrosis-a-fatal-lung-disease-300033929.html.="" published="" 12,="" 02015.="" accessed="" 18,="" 2015.="" image="" "ipf="" nih"="" by="" heart="" blood="" institute="" (nih)="" -="" (nih).="" licensed="" under="" domain="" via="" wikimedia="" commons="" commons.wikimedia.org="" wiki="" file:ipf_nih.jpg#mediaviewer="" file:ipf_nih.jpg"="">http://commons.wikimedia.org/wiki/File:Ipf_NIH.jpg#mediaviewer/File:Ipf_NIH.jpg

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