An international online survey with more than 500 participants suffering from idiopathic pulmonary fibrosis (IPF) provided a picture into the real-life emotions of these patients. The survey was conducted by Germany-based Boehringer Ingelheim with the goal of investigating the feelings and experiences of IPF patients, from diagnosis and treatment to future concerns.
IPF is a disease identified by thickened and scarred lung tissue that makes it difficult to breathe. The disease is estimated to affect around 3 million people worldwide. As its signs and symptoms are similar to a number of other common medical conditions, IPF is difficult to diagnose and requires resources and specialties that could negatively impact the patient.
This leads to delays in diagnosis and misdiagnosis in a large number of patients. In fact, initial misdiagnosis has been reported in half of IPF patients, and the mean time from first symptoms to an IPF diagnosis is one to two years.
The survey revealed that once the patients were diagnosed with IPF, 49 percent felt worried; 45 percent felt afraid; 34 percent were confused; 29 percent felt frustrated; and 23 percent feared not being able to perform what they were used to doing.
When questioned about their thoughts on IPF, 33 percent mentioned breathlessness, a constant fear that shortness of breath will prevent them from performing daily tasks.
After receiving treatment, the survey revealed that 31 percent of patients felt more positive with a brighter outlook, while 28 percent said their emotions were negative with a less-bright outlook.
“This thought-provoking research echoes what my patients talk to me about when we discuss life with IPF. Thankfully, our understanding of the treatment of IPF has moved forward a lot in the last few years,” Dr. Toby Maher, consultant respiratory physician at Royal Brompton Hospital in London, England, said in a press release. “As physicians we can help address the negative emotions many patients experience at diagnosis and improve how they see their future with the disease so they feel positive about starting effective treatment.”
The survey also showed that support groups help patients, with 42 percent mentioning they felt more supported and less isolated, and had access to more information. Finally, while living with IPF can be a challenge, many study participants expressed positive thoughts about the future, with 39 percent wanting to enjoy time with family and 21 percent looking forward to a vacation.
“Living with IPF can be frightening and too few people appreciate just how isolating living with a rare disease like IPF can be. This research is an important way for those of us who are affected to be heard, so that understanding and support for the IPF patient community continues to improve,” said Robert Davidson, president of the Canadian Pulmonary Fibrosis Foundation (CPFF).
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