New evidence brings hope for people living with IPF

Saturday, 25 Mar 2017

Evidence is building for non-pharmacological management of idiopathic pulmonary fibrosis (IPF) including ambulatory oxygen and pulmonary rehabilitation.

Professor Anne Holland told the TZANZSRS meeting here in Canberra that significant work in the area of oxygen therapy had recently shown the mechanism by which ambulatory oxygen can improve exercise capacity for patients.

Professor Holland, from the department of rehabilitation, nutrition and sport at the Alfred Health Clinical School, told the limbic the findings would help improve equity of access to ambulatory oxygen. Practice, guidelines and policy were currently variable, she said.

“There is renewed hope and a rationale now we know ambulatory oxygen improves muscle metabolism which in turn improves exercise capacity. This is also consistent with the patient experience that oxygen can help patients do more – have more energy and get around to do their daily activities,” she said.

She said about half of IPF patients have exertional desaturation yet for many, especially in New South Wales and Queensland, ambulatory oxygen was not routinely funded.

“The variable policy across states gives us the equipoise to do more research in this area and investigate further,” she said.

A trial currently underway in Melbourne was looking at the benefits of delivering ambulatory oxygen by portable concentrators rather than oxygen cylinders.

“The concentrators are light and more moveable for patients but the upfront cost is high,” she said.

Pulmonary rehab works too

Professor Holland said more evidence had recently become available for the benefit of pulmonary rehabilitation in IPF.

“There has always been a question about whether or not the benefits of pulmonary rehabilitation was meaningful for patients with IPF. Was it worth the investment of patients’ time and effort?”

“Now we know the answer is yes. Pulmonary rehabilitation can improve exercise capacity and quality of life in IPF with a similar magnitude of benefit as for COPD and other interstitial lung diseases.”

She said as well as reassuring patients and clinicians that pulmonary rehabilitation was worthwhile, the findings may also help overcome the general reluctance to open rehabilitation programs to this patient group.

“The exercise component is essentially the same as that used in COPD however we know that some patients with progressive disease don’t benefit as much.”

“However patients with IPF do have different educational needs and are especially interested in what the future holds, for them, how to reduce progression of their disease, advanced care planning and how to manage troublesome cough and fatigue.”


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