Research Opportunity: Seeking IPF patients' views about ambulatory oxygen and managing breathlessness

22
July 2023

Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?

The OXYPuF qualitative study aims to explore patients' views and experiences of ways to manage breathlessness.

The OXYPuF qualitative study is one of several studies currently recruiting participants in the UK.  You can search for all available trials using the European Pulmonary Fibrosis Federation (EU-IPFF) clinical trial finder or by searching on ClinicalTrials.gov.  

This study is not a clinical trial. If you are interested in taking part in a clinical trial, you must speak to your clinical team.    

What is the OXYPuF qualitative study?  

The OXYPuF qualitative study is a qualitative research project (this means there are no medications to take). The study will explore how patients feel about the use of oxygen, compared to behavioural techniques to manage breathlessness. Although ambulatory oxygen is commonly prescribed to relieve exertional breathlessness, the evidence to support its effectiveness is lacking. This study supports a larger clinical trial (OXYPuF) which aims to assess the effectiveness of ambulatory oxygen compared with advice on managing breathlessness without the use of oxygen.

Can I take part?

You may be able to participate if you:

  • have been diagnosed with idiopathic pulmonary fibrosis (IPF)
  • are able to provide informed consent and be comfortable discussing your views and experiences in English.

In all studies, there are lots of different reasons why you may or may not be able to take part.  These are known as inclusion and exclusion criteria. Only the study team will be able to fully determine whether you are able to take part in the study.

What is involved?

The study involves sharing your views and experiences in an interview with a researcher over the telephone or remote video link. Carers are welcome to join the discussion alongside you. The conversation will be recorded. You will also be invited to take photographs to depict your views on ambulatory oxygen use compared to other ways of managing breathlessness. These photographs are for discussion in the interview.

Where in the UK is this study taking place?

The study will be recruiting patients throughout the UK and the discussion will be held remotely via video link or telephone call.

If you are interested in taking part or would like more information about this study, please email r.l.adams@birmingham.ac.uk or telephone 07811 650647.

This post provides information about an opportunity to participate in research. More detailed information about the study can be found by following the links provided.  If you have any questions about the research study, please speak to your medical team and contact the researchers directly.  APF does not endorse or recommend any specific study.  All responsibility for the study remains with the sponsors and investigators.

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