Patients with idiopathic pulmonary fibrosis (IPF) in Canada face challenges in equal access to quality healthcare services at the national level, with drastic differences between provinces, according to the findings of a new report from the Canadian Pulmonary Fibrosis Foundation (CPFF) and Hoffmann-La Roche.
The report, titled “The Burden of Idiopathic Pulmonary Fibrosis in Canada,” recommends immediate action to resolve the identified problems, and to alleviate the considerable burden associated with the disease for patients and the healthcare system in Canada.
“It is never easy to receive a life-altering diagnosis like IPF, and it can be a scary and isolating experience to face challenges on your treatment journey,” Sharon Lee, executive director of the CPFF, said in a press release.
“By shedding light on the challenges that people with IPF face in Canada, we hope to encourage policymakers and stakeholders to prioritize support for Canadians living with this disease, and ensure that all patients, regardless of which province they call home, have access to the high quality of care they deserve,” Lee added.
The report included results from a nationwide study, with data collected from 2007 to 2011, which revealed that the prevalence of IPF in Canada is higher compared to many other developed countries, with 41.8 cases per 100,000 people. The disease leads to the death of 5,000 patients in Canada each year.
The prevalence of IPF also varied between provinces, with the highest rates seen in Quebec.
“IPF is difficult to diagnose, and some patients can be symptomatic for years before they receive a correct diagnosis,” said Martin Kolb, MD, PhD, professor at McMaster University and contributor to the report.
“Few physicians are trained to identify IPF at first instance, creating a delay in the diagnosis that can lead to patient suffering. Increasing awareness and understanding of the disease are critical to help prevent late diagnosis, reduce the cost of care, and ultimately improve patient outcomes,” he added.
But challenges go beyond delays in IPF diagnosis. The new report also shows that having access to high quality treatment and care can be a challenge for patients across several provinces.
The country has 16 interstitial lung disease (ILD) clinics, and not all provinces have equal access to centers where patients can be evaluated by and receive the support from healthcare providers who specialize in ILD, including respirologists, in-house multidisciplinary teams, nurses, and educators.
The funding and total number of ILD specialists available also differ significantly between these centers and between provinces, the report notes.
In addition, eligibility and access to supplemental home oxygen therapy and pulmonary rehabilitation was also found to be a challenge for IPF patients in Canada, with drastic differences between provinces.
Collectively, these challenges can negatively affect health outcomes for patients with IPF.
As IPF symptoms can lead to serious physical disabilities, many patients can no longer work, which may significantly affect their financial situation. IPF’s heavy economic burden also affects the Canadian healthcare system, with direct costs comparable to or higher than those of asthma and lung cancer in the country.
“While much progress has been made in the diagnosis and management of IPF, there are still ways to improve patient-centric care of this devastating disease in Canada,” the researchers stated. “Healthcare policy decisions should be grounded in research, and our findings demonstrate that there is still an unmet need in improving the lives of people with IPF and other ILDs.”
The report provides easy-to-implement possible solutions, which are based on increasing awareness and understanding of IPF. Providing consistent and better quality of care across provinces can ultimately contribute to better outcomes for patients, the researchers wrote.
“Everyone with IPF deserves access to the right treatment and care,” the team said, adding that this report hopes to empower patients and drive meaningful change in treatment guidelines, standard of care, and healthcare policy and regulations.