Dr. Kerri Johannson

Respirologist Dr. Kerri Johannson at the University of Calgary has been advocating for years for improved funding and better access to oxygen therapy for her patients. “Some of my patients are basically suffocating, then I have to subject them to tests to prove they are suffocating, before they can have funding for oxygen therapy in Alberta,” she says.

This restrictive policy for oxygen therapy funding seems to be the result of the limited amount of evidence-based data on the benefits and risks of supplemental oxygen therapy. “There are obvious ethical issues to conducting blinded randomized controlled trials (the highest level of scientific evidence) for oxygen therapy,” she explains. “It’s difficult to ask patients to carry around tanks and tubing and live with the other burdens of oxygen therapy, when they may just be getting room air, rather than oxygen. So creative methods to study this issue are needed”

In light of the limited available evidence, Dr. Johannson led a team of researchers to conduct an international Delphi survey asking 45 chosen ILD experts from 17 countries about their use of oxygen in patients with fibrotic interstitial lung disease to determine which recommendations they could agree upon in using oxygen therapy for people with ILD. The survey questions were derived from a comprehensive literature review and a series of interviews. Survey responders were from countries as diverse as Iceland, Australia, Brazil, Japan, the US and the UK, as well as Canada. Most respondents were physicians; three were nurses; all had expertise in oxygen and ILD.

Published in the European Respiratory Journal in May 2019, “Oxygen in patients with fibrotic interstitial lung disease: an international Delphi survey,” found that the experts agreed that supplemental oxygen should be recommended for patients with fibrotic interstitial lung disease in cases of severe resting hypoxaemia (an abnormally low concentration of oxygen in the blood), or peripheral oxygen saturation <85-89% with exertion, particularly if the patient experienced symptoms due to the hypoxaemia or had to limit their exercise.

The survey also noted that there are differences in funding coverage for oxygen, based on desaturation thresholds, clinical symptoms and testing requirements.

Within Canada there are funding differences for oxygen therapy as well. “Sometimes physicians equate a need for oxygen therapy with what is funded, which is an issue,” says Dr. Johannson. “Just because oxygen is only funded when levels are <80 per cent, doesn’t mean that someone at 82 per cent doesn’t need it, or wouldn’t benefit from it. We should not be making clinical decisions based on funding policies. We need to change funding policy to support the best outcomes and quality of life for our patients.”

Dr. Johannson was also the lead author of an article in the September 2017 issue of the Annals of the American Thoracic Society  “Supplemental Oxygen in Interstitial Lung Disease: An Art in Need of Science.” The authors point out that there is limited evidence guiding the use of supplemental oxygen in ILD, and its use varies widely in clinical practice. It is also unclear whether supplemental oxygen improves outcomes and the role of portable oxygen usage for exertion only is particularly controversial.

Unfortunately, in some parts of the country, the lack of robust data creates barriers to funding support and access to supplemental oxygen for patients with ILD. CPFF’s Patient Charter calls for: “Seamless, well-integrated health and social care services, including timely access to ambulatory and personalized home oxygen services and appropriate IPF medications.”

“The absence of evidence is not evidence of absence,” says Dr. Johannson. “We need to influence policy to provide the option to our patients of this vital therapy. We all need oxygen to survive and thrive.”

Oxygen therapy can help patients remain physically active and keep muscles strong, maintaining function and quality of life. Most health professionals agree that activity helps everyone in so many ways, physically, mentally and emotionally.

Further research is needed, but low oxygen levels may increase the risk of pulmonary hypertension, says Dr. Johannson. It is a serious condition characterized by high blood pressure in the arteries to your lungs. The blood vessels that carry blood from your heart to your lungs become hard and narrow and over time, your heart weakens and cannot do its job, resulting in heart failure.

Despite its benefits, both proven and possible, there are some patients who do not want oxygen therapy. They find it a “frightening threshold to cross,” says Dr. Johannson, “thinking it is the first step in their decline. They also don’t want to appear old and sick in public. And it can be difficult to manage for frail patients.”

“It is up to physicians to explain the potential benefits of oxygen therapy and ways it can fit into a patient’s lifestyle and view it as a way to maintain and even improve their quality of life,” she adds. “Ultimately the decision about whether to use oxygen or not is made by the patient, and that decision should be informed by data.”

There is hope that future research into oxygen therapy may lead to a better understanding of its impact on individual’s lives and the health care system. A study in Melbourne, Australia is underway, looking at the rates of hospitalization, quality of life, exercise and deconditioning in people with PF who are on oxygen therapy compared to those who are not. And researchers are looking into ways to use “fitbits” to track activity and study its impacts on the physiology of exercise.

“I hope that the Delphi survey helps to guide physicians in providing oxygen therapy for their ILD patients and helps us to influence funding policy so that this vital therapy remains an option for those who need it,” concludes Dr. Johannson.