Recent IPF Study Addresses Emotional and Physical Impact on Both Patients and Caregivers

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lungsResults of a new study are shedding light on the emotional and physical impact that IPF has on both patients and caregivers. The new insights could help pave the way for improved patient care, leading to better quality of life for those with the disease.

Idiopathic pulmonary fibrosis (IPF) is a rare, fatal lung disease in which the lung tissues and the alveoli become thick and scarred, compromising oxygen transfer between the lungs and the bloodstream. Patients with IPF experience a shortness of breath that gradually worsens, a persistent cough, and difficulties in performing everyday activities. Respiratory failure is the main cause of death associated with IPF; other causes include pulmonary hypertension. There is no cure for the disease and a majority of patients live only three to five years after being diagnosed.

The EXPLORE IPF survey is a study led by a multidisciplinary Advisory Committee focused on the experiences, needs and emotional status of patients living with IPF and their caregivers. The survey was sponsored by Boehringer Ingelheim and conducted by Taylor Nelson Sofres (TNS), who surveyed 100 IPF patients and 100 caregivers between April 14 and May 15, 2014. The study was a 15-minute online survey regarding patients’ and caregivers’ experiences with IPF. The main conclusion of the study was that both patients and caregivers suffer a significant emotional burden with the disease and that they feel added support and resources may help to better manage IPF.

“These survey findings remind me of my own experience with IPF,” said John Morthanos from the EXPLORE IPF survey Advisory Committee, who is an IPF patient himself. “My wife and I spent years trying to find out what was wrong with me. We were fortunate that after many years of misdiagnoses, 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.”

This survey revealed that on average, most of the patients visited two to three doctors before receiving a proper diagnosis, and that nine out of ten patients had never heard about IPF before. After being diagnosed, approximately three-quarters of the patients and caregivers did not fully comprehend the emotional burden associated with the disease. Around seven out of ten patients were found to be embarrassed with the use of their supplemental oxygen equipment. Patients also reported coughing as an embarrassing symptom that they were unable to control. Among caregivers, many expressed their feelings of isolation and partial loss of independence and social life, indicating their need for support.

“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,” noted Dr. Jeffrey Swigris, an 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.”

Members of the EXPLORE IPF Advisory Committee made several recommendations to address the lack of education and support. They emphasize that people should be aware of the signs and symptoms of the disease. Healthcare professionals should also be trained to assess PF, and should provide a clear explanation upon diagnosis and continued support to the patients. The Committee also suggests the creation of resources and support networks for patients and caregivers.

For more detailed results about this survey, please visit the following website:

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Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.
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