Breathless But Hopeful: Overcoming the Burdens of IPF
For the 14,000 Canadians currently living with pulmonary fibrosis, lack of awareness about their condition is affecting their quality of life.
For Peter Newton, 68, a diagnosis of idiopathic pulmonary fibrosis (IPF) was shocking but explained a lot about how he had been feeling. IPF is an incurable lung disease that causes scarring (fibrosis) of the lungs; common symptoms include breathlessness and a chronic cough. Diagnosed with moderate stage IPF in June 2018, Peter believes he had symptoms as far back as the early 90s. Like many Canadians, he went undiagnosed for years.
Photo: Courtesy of Peter Newton
“With IPF, there are many symptoms that are common to other ailments,” says Peter, “But looking back, my lungs were more likely compromised when I thought it was a fitness issue. There is no doubt IPF has a low awareness level, I had zero clue about the disease.”
Thankfully, a new report titled The Burden of Idiopathic Pulmonary Fibrosis in Canada is shedding light on major gaps in access to treatments, resources and support services, as well as significant mental, physical and economic burdens placed on the health care system and patients.
Who is at risk?
IPF primarily affects adults over the age of 50. It’s more common in men than women, but it can be seen across gender and age spectrums. Of the more than 14,000 Canadians currently living with pulmonary fibrosis, several thousand will die from it each year. The cause is not known and IPF can affect otherwise healthy adults.
“IPF is difficult to diagnose because it presents like many other lung diseases,” says Dr. Martin Kolb, Professor of Medicine, Division of Respirology at McMaster University. IPF symptoms are often wrongly attributed to smoking behaviour or aging.
To complicate things further, knowledge of IPF is also low among the medical community. “IPF is not a well-known disease and many patients feel alone and unsupported throughout their journey with this disease,” says Dr. Kolb. Not surprisingly, depression is highly prevalent in this patient population and is tied to increased financial burden.
Improving care through increased awareness
Increased awareness and understanding are essential to improve care and quality of life for people with IPF. The Burden of Idiopathic Pulmonary Fibrosis in Canada report calls for more education and awareness, not only for the general public but for health care professionals, including general practitioners. “More education and awareness about IPF is critical to reduce diagnostic delays and improve patient outcomes,” says Dr. Kolb. “More training is also needed for general practitioners about IPF, so patients can be referred to specialists sooner.”
Equality of care across the country
Once a proper diagnosis occurs, patients still face far too many barriers when it comes to receiving treatment and support for IPF. “In Canada, there is limited availability of interstitial lung disease (ILD) clinics and respirologists, so patients have a hard time receiving the specialized care they need,” says Dr. Kolb.
“These specialized ILD clinics are referral-based and not all provinces have equal access. In fact, there are just 16 ILD clinics in Canada and several provinces don’t have even one such clinic. Some patients have to travel long distances or may not be able to access them at all.”
In Canada, the prevalence of IPF is highest in Quebec and Prince Edward Island. Quebec has four ILD centres; PEI has none. Such disparities place a substantial burden on patients and their families as they seek access to quality care.
“Quality of care should not be determined by where you live,” according to The Burden of Idiopathic Pulmonary Fibrosis in Canada report. Resources for IPF treatment need to be established everywhere to ensure quality of care throughout the country. The report calls for improved funding from the government so that ILD centres across the country can attract and retain qualified staff in order to provide the best care.
Expanded access to support services
Of course, support services are also a major component of quality care. An IPF diagnosis comes with a lot of unknowns and many patients feel alone and unsupported after diagnosis.
Patient and caregiver support groups, patient empowerment resources, as well as palliative care, are all critical to maintaining quality of life, both for patients and their loved ones. Expanding access to these programs, including finding a way to bring them outside of the hospital setting, is a way to lower barriers and broaden availability of these services, according to The Burden of Idiopathic Pulmonary Fibrosis in Canada.
Empowering patients is an important step in driving meaningful change and making a difference in the lives of those affected by IPF.
Go to FightIPF.ca to learn more.
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