Despite the lack of understanding there still is about idiopathic pulmonary fibrosis (IPF), patients who receive support and have access to resources can better overcome the obstacles related to the disease. These are conclusions from a recent survey conducted on both IPF patients and caregivers that focused on the emotional and psychological burden of the disease.
The survey, which is available online at LungsandYou.com, included data from 100 patients and another 100 caregivers, and about 73% of the patients and 82% of the caregivers reported that they did not completely understand the emotional burden of the disease. In addition, 69% of the patients reported to be embarrassed by their need to use supplemental oxygen and being seen with it.
“These survey findings remind me of my own experience with IPF,” explained the member of the EXPLORE IPF survey Advisory Committee, John Morthanos, who is also an IPF patient and advocate. “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.”
Almost all of the patients (93%) feel embarrassed by their difficulty to control their coughing, while 76% said they keep distance from other people because of it. According to 72% of patients, they believe receiving disease management can improve their well-being. About 53% of the patients and 55% of the caregivers reported that increasing their understanding of the disease can help in improving their well-being, while 70% of the patients and 75% of the caregivers believe that advocacy groups are also helpful.
Receiving the right diagnosis is among the largest challenges in COPD, as over 50% of the patients had to see at least two doctors almost two years prior to arriving at a final diagnosis of the disease, and had difficulties in finding a physician with knowledge about the disease. In addition to patients, caregivers also need support, as their satisfaction with their independence and social needs decreased from 84% and 85% prior to the diagnosis to 39% and 38% after, respectively. In addition, 64% of the caregivers reported feeling isolated.
“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,” added another member of the EXPLORE IPF survey Advisory Committee, Jeffrey Swigris, DO, MS, who is an associate professor of medicine for the Autoimmune Lung Center and Interstitial Lung Disease Program at National Jewish Health.
“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,” Swigris added.
The committee suggested the use of data from the survey in interventions geared towards boosting the general public’s education regarding IPF, including signs and symptoms, when to seek a specialist’s care, and decreasing stigma. In addition, they also believe that healthcare professionals should be more aware of the need to refer patients to pulmonologists and IPF specialists.
The committee also believes there is a need for improved discussion between healthcare professionals and patients/caregivers to accelerate diagnosis and understanding, as well as to build information, resources and support networks for both patients and caregivers.