Results from a recent survey called EXPLORE IPF showed that people with idiopathic pulmonary fibrosis (IPF) have a lack of understanding of their disease, experience significant emotional difficulties, and report the need for more support and care resources to help them deal with their condition.
“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 in a recent news release. “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.”
EXPLORE IPF is a survey that assesses the needs, experiences and feelings of patients and caregivers that have to deal with idiopathic pulmonary fibrosis. The company Taylor Nelson Sofres (TNS) conducted the survey with the support of Boehringer Ingelheim, and a multidisciplinary team from the Advisory Committee that was responsible in the recruitment 100 IPF patients and 100 caregivers in the United States. All participants were asked to complete a 15-minute online survey exploring their IPF journeys, retrospectively.
Results revealed that 73% of newly diagnosed patients and 82% of caregivers had a lack of understanding of the emotional burden that the condition causes. Results also showed that approximately 69% of patients that need supplemental oxygen are uncomfortable of being seen with their oxygen equipment.
Results from the survey also showed that:
- 93% of survey patients experienced coughing as a very uncomfortable and embarrassing symptom because they are unable to control it, and 73% said that other people keep their distance because of the persistent cough.
- Nearly 52% of patients felt frustrated by the diagnosis process, with patients reporting they sought the help of 2 to 3 doctors over approximately 2 years, and found difficult to find a specialist.
- Caregivers reported that before their diagnoses, patients generally felt satisfied with their perceived independence (84%) and social life (85%), while after diagnosis, only 39% and 38% maintained these feelings, respectively. In addition, 64% reported feeling isolated from caregivers dealing with the same situation.
- A total of 72% of patients felt that improved disease management could improve their well being, and 53% of patients and 55% of caregivers said they needed to better comprehend how to manage the disease.
- A total of 70% of patients and 75% of caregivers reported needing support and advocacy groups.
“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 in a news release. “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.”
The results from this study underline the need for the general population to know more about IPF in order to ultimately improve disease diagnosis and management, improve help-seeking behavior and diminish stigma. These results can also help health care professionals distinguish IPF from other lung conditions. In addition, these findings can improve communication between health professionals, patients and caregivers about the appropriate management of the disease.