New Survey Uncovers Emotional and Physical Impact of Idiopathic Pulmonary Fibrosis, a Fatal Lung Disease

- Less than 1 in 3 patients and caregivers are prepared for how IPF will affect their daily life

- Survey Advisory Committee makes recommendations to address important improvements in education and support

Feb 12, 2015, 09:19 ET from Boehringer Ingelheim Pharmaceuticals, Inc.

RIDGEFIELD, Conn., Feb. 12, 2015 /PRNewswire/ -- People living with idiopathic pulmonary fibrosis (IPF) lack understanding of the disease, experience significant emotional burden and feel that more support and resources can help with the challenges associated with this devastating disease, according to EXPLORE IPF, a new survey of IPF patients and caregivers.

"These survey findings remind me of my own experience with IPF," said John Morthanos, an IPF patient and advocate who is part of the EXPLORE IPF survey Advisory Committee. "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."

According to the survey, which included 100 self-reported patients and 100 caregivers, after receiving a diagnosis, approximately three-quarters of patients (73%) and caregivers (82%) did not understand the emotional toll IPF would have on them. Nearly seven out of 10 (69%) patients who use supplemental oxygen were embarrassed about being seen with their equipment.

"The word 'idiopathic' means that we do not know the cause of this disease. From this survey, we do know that greater awareness and understanding of IPF is needed among patients, caregivers and their doctors," said 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. "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."

IPF is a rare and fatal lung disease and most patients only live three to five years following diagnosis.

Key Survey Findings

  • Coughing is a common but embarrassing symptom
    • 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
  • Getting diagnosed is a long and frustrating journey
    • 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 need support
    • 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
  • A disease management plan can help improve overall well-being in patients living with IPF
    • 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
    • More than seven in 10 patients (70%) and caregivers (75%) agreed that greater support and advocacy groups would be helpful

Taking Action
Members of the EXPLORE IPF Advisory Committee recommend that the survey results be used to:

  • Educate the general public about IPF to:
    • Know the signs and symptoms
    • See a doctor when experiencing possible symptoms
    • Decrease stigma associated with the disease
  • Inform healthcare professionals, including primary care providers, on when to refer patients to pulmonologists specialized to distinguish IPF from other lung diseases
  • Improve the dialogue between healthcare professionals and patients/caregivers to speed diagnosis, provide understanding of IPF upon diagnosis and continue ongoing support and comfort after diagnosis
  • Create information, resources and support networks for patients and caregivers

For detailed results visit

About the EXPLORE IPF Survey
The EXPLORE IPF survey is an assessment of the needs, experiences and feelings of patients and caregivers living with IPF. The survey was conducted by research company Taylor Nelson Sofres (TNS) and sponsored by Boehringer Ingelheim. It was led by a multidisciplinary Advisory Committee that includes IPF thought leaders and advocates dedicated to addressing the unmet needs of this patient community. The survey was conducted between April 14, 2014 and May 15, 2014 among 100 patients with IPF and 100 caregivers, all self-reported and age 18 and over in the United States. Respondents completed a 15-minute online survey exploring their IPF journeys, retrospectively.

The Advisory Committee members, who were responsible for the development and contextualization of the survey, include:

  • 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.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a rare and fatal lung disease. The incidence of IPF can vary considerably and there is some evidence that the population is increasing. IPF is characterized by progressive scarring of lung tissue and loss of lung function over time. Development of scarred tissue is called fibrosis. Over time, as the tissue thickens and stiffens with scarring, the lungs lose their ability to take in and transfer oxygen into the bloodstream, and vital organs do not get enough oxygen. As a result, individuals with IPF experience shortness of breath, cough and often have difficulty participating in everyday physical activities. In addition to symptom management options, there are also FDA-approved medications available to help patients suffering from IPF.

Leading Respiratory Forward
Through research, treatments and patient-centric support services, the Boehringer Ingelheim (BI) lung health portfolio is designed to help address the challenges people living with a lung disease face every day. Leveraging the company's cutting edge science and leadership in chronic obstructive pulmonary disease (COPD), BI is researching new treatment approaches where needs persist. It is the company's goal to make a difference in the lives of patients with COPD, asthma, lung cancer, idiopathic pulmonary fibrosis and other respiratory diseases.

About Boehringer Ingelheim Pharmaceuticals, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, Conn., is the largest U.S. subsidiary of Boehringer Ingelheim Corporation (Ridgefield, CT) and a member of the Boehringer Ingelheim group of companies.

The Boehringer Ingelheim group is one of the world's 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 142 affiliates and more than 47,400 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel medications of high therapeutic value for human and veterinary medicine.

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SOURCE Boehringer Ingelheim Pharmaceuticals, Inc.