Those who live with idiopathic pulmonary fibrosis (IPF) often lack knowledge and understanding of their condition, and they tend to experience a heavy emotional burden that makes them feel that more support and resources would help them overcome the disease’s challenges, according to a new survey of IPF patients and caregivers, called the EXPLORE IPF.
John Morthanos, an IPF patient that is also part of the EXPLORE IPF survey Advisory Committee, said in a press release: “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.”
According to data collected through the survey, which included 100 caregivers and 100 self-reported patients, after diagnosis, about 82 percent of caregivers and 73 percent of patients did not understand the emotional burden the disease would exert on them. Approximately 69 percent of the patients that use supplemental oxygen felt embarrassed if someone saw them with the equipment.
Jeffrey Swigris, professor and EXPLORE IPF survey Advisory Committee member, explained: “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. (…) 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, fatal disease, with most patients only living up to 5 years after the diagnosis. The disease’s mortality rate emphasizes the need for a better and more accurate understanding of the condition. The key findings of the survey can be read here.