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CompletedInterventional

What is the best treatment and the most cost effective treatment for patients with idiopathic pulmonary fibrosis (IPF): advice on breathlessness, or advice on breathlessness and oxygen to use whilst walking and doing other daily activities at home?

Idiopathic pulmonary fibrosis (IPF) is a lung condition that causes scarring, making it hard to breathe during simple activities like walking. Currently, different NHS hospitals offer different care: some offer written advice on breathlessness, while others provide portable home oxygen cylinders to use during daily tasks. The OXYPuF trial wants to find out which approach works best and provides the best value for the NHS. About 260 adults with IPF will take part over six months. Half will receive printed advice on managing their breathlessness. The other half will receive the same advice along with portable oxygen tanks to use when moving around. Researchers will check participants' activity levels, cough, and symptoms to compare how both groups get on. The findings will help doctors offer clearer, more consistent care to people with IPF in the future.

At a glance

Status
Completed
Sponsor
University of Birmingham
Enrolment target
260
Start
01 Oct 2022
Estimated completion
30 Mar 2023

What is this study about?

Idiopathic pulmonary fibrosis, often shortened to IPF, is a long-term condition where the lungs become scarred and stiff. Over time, this makes it harder for the lungs to take in oxygen. People living with IPF often notice that simple everyday tasks, like walking up the stairs, shopping, or doing light housework, leave them feeling very breathless and tired.

At the moment, doctors across the UK do not all agree on the best way to treat this breathlessness. Some NHS clinics give people practical tips and advice on breathing techniques to help them cope. Other clinics prescribe portable oxygen cylinders that patients can carry around and use while they stay active. Because both approaches are used, we do not yet know for sure which one helps people feel better day to day, or which is the most cost-effective choice for the NHS.

The OXYPuF study aims to settle this question. By comparing these two treatments side by side in 260 patients, the researchers want to find out whether portable oxygen makes a real difference to daily activity, coughing, and general well-being. The results will help guide NHS guidelines so that everyone with IPF receives the best possible support.

Key takeaways

  • The OXYPuF trial compares breathlessness advice alone against advice plus portable oxygen for people with IPF.
  • Around 260 participants across the UK will take part over a six-month period.
  • You will be placed into one of two groups by random chance.
  • Participation involves three hospital visits and filling out simple symptom diaries.
  • The results will help the NHS decide the best and most cost-effective way to treat breathlessness in IPF.

Who may be eligible?

You may be able to join this study if you are 18 or older and have a confirmed medical diagnosis of idiopathic pulmonary fibrosis (IPF) from a specialist NHS lung team. You should experience noticeable breathlessness during daily tasks, such as when walking up a gentle hill, and you must be able to complete a simple walking or sitting-to-standing exercise test.

You will not be able to take part if you already need continuous oxygen while resting at home, or if you have had severe breathing complications in the past that required breathing machine support. The study is also not suitable for people who are currently on the waiting list for a lung transplant, or those who cannot safely manage oxygen equipment at home.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

  1. I am aged 18 or older.
  2. I have been diagnosed with idiopathic pulmonary fibrosis (IPF) by an NHS specialist.
  3. I get breathless when walking or doing light daily activities.
  4. I do not currently need to use oxygen while resting.
  5. I am not currently on an active waiting list for a lung transplant.
  6. I am able to safely manage portable oxygen cylinders at home if selected.
Answer every question to see your result.

What does participation involve?

Taking part in the study lasts for about six months. If you join, a computer will place you by chance into one of two groups. One group receives written advice on managing breathlessness. The other group receives the same advice plus portable oxygen cylinders delivered to their home to use when active.

You will need to attend three main hospital visits: at the start of the study, at three months, and at six months. During these visits, the research team will measure your breathing, activity levels, and symptoms. You will also fill in questionnaires about your daily life, which you can complete at the clinic or post back from home. If you are given oxygen, the team will call you during the first week to make sure you feel confident using the equipment. A small number of participants may also be invited to a one-hour chat to share their personal thoughts on living with IPF.

Potential risks and benefits

Taking part might not improve your health directly, but the information collected will help doctors provide better care for future patients. There are very few risks involved. Your doctor will make sure it is completely safe for you to use oxygen before you join, and the equipment comes with full instructions and support. Joining the trial is entirely your choice. If you decide to take part, you are free to stop at any time without giving a reason, and your regular NHS medical care will not be affected in any way.

Locations (1)

  • Queen Elizabeth Hospital
    Approximate
    Birmingham, England

Common questions

Can I choose whether I get home oxygen?

No. A computer randomly decides which group you are in to ensure the study results are fair and reliable.

Will using portable oxygen cure my IPF?

No. Oxygen does not cure IPF or heal lung scarring, but it may help ease breathlessness when you are moving around.

What happens if I have trouble using the oxygen cylinder?

You will receive full training, a check-up call in your first week, and direct phone numbers for both your clinical team and the study team if you need support.

Will taking part cost me anything?

No. The oxygen equipment, advice sheets, and study materials are provided free of charge, along with pre-paid envelopes for posting forms.

Can I leave the study early if I change my mind?

Yes. You can leave the study at any time without your normal NHS care or relationship with your doctor being affected.

How to find out more

Rebecca Record

Always speak to your GP or specialist before deciding to take part in a study.

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