Idiopathic pulmonary fibrosis (IPF) is a scarring lung disease that affects older adults. It usually progresses over time leading to disabling shortness of breath and cough. Unfortunately, although medications can slow down the rate of lung scarring, they do not improve patients’ symptoms or quality of life. Shortness of breath is the most common symptom in IPF and the one which has the biggest impact on patients’ lives. Treatments for breathlessness have been shown to be effective for people with other lung conditions but we do not know whether they work for people with IPF. It is important that treatments are properly tested in IPF to help patients, doctors and policy makers make correct treatment decisions.
When designing a study to test a treatment's effectiveness we need to understand how many patients will be suitable and willing to take part and how many complete all study tests and measurements. We also need to identify the best measurements to use and ensure that they are meaningful to patients and their carers. We will conduct a feasibility study to answer these questions.
Breathless patients with IPF and other fibrotic interstitial lung diseases will be randomly selected to receive the breathlessness treatment straight away or be placed on a waiting list to start the treatment 8 weeks later. The treatment will involve training patients in techniques to help their breathing. It will be delivered by a trained therapist during 2 hour-long appointments and a telephone call over 3 weeks. Assessment of breathlessness and quality of life and measurement of daily activity will be performed at the start of the study and repeated every four weeks for a total of 16 weeks.
At the end of this study, we will know if a larger study is possible, whether it is potentially cost effective and how this study should be designed.