RecruitingOBSERVATIONAL

Investigating Health Related Quality of Life in Patients With Chronic Respiratory Failure

This study aims to understand the daily lives of people living with long-term breathing problems (chronic respiratory failure). We want to find out how these conditions affect their quality of life, which means things like their comfort, activities, and overall well-being. We'll also look at how different treatments, such as breathing support machines, might help to improve their quality of life. This research will involve asking people to complete questionnaires about their health and how they feel. The goal is to gather important information to better support patients with these conditions.

At a glance

Status

Recruiting

Sponsor

Guy's and St Thomas' NHS Foundation Trust

Enrolment target

200

Start

19 Dec 2019

Estimated completion

31 Dec 2026

Chronic Obstructive Pulmonary Disease Respiratory Failure Neuromuscular Diseases Ventilatory Failure

What is this study about?

This study, called "Investigating Health Related Quality of Life in Patients With Chronic Respiratory Failure," is all about understanding how long-term breathing difficulties affect people in their everyday lives. When someone has 'chronic respiratory failure,' it means their lungs aren't working as well as they should, leading to problems like breathlessness. This can be caused by conditions such as Chronic Obstructive Pulmonary Disease (COPD) or certain illnesses affecting the muscles that help you breathe (neuromuscular diseases).

The main goal is to find out more about what we call 'health-related quality of life' for these patients. This isn't just about how long someone lives, but how well they live – how they feel, their comfort, their independence, and their ability to do the things they enjoy. We also want to see if the treatments people receive, like using special breathing machines, make a difference to how they feel and their quality of life.

By collecting this information, we hope to gain a clearer picture of the challenges people with long-term breathing problems face. This understanding can then help doctors and healthcare professionals find better ways to support patients and improve their care, ensuring their treatments not only help their breathing but also help them live more comfortably and fully.

Key takeaways

The study aims to understand how long-term breathing problems affect daily life.
It will use questionnaires to gather information about quality of life.
No new treatments or medicines are involved; you continue your usual care.
You must be 18 or older and currently receiving breathing support.
Your participation helps improve support for future patients.
You can stop taking part at any time without affecting your medical care.

Who may be eligible?

To be able to take part in this study, you would need to have been diagnosed with chronic respiratory failure. This means you have a long-term breathing problem where your lungs struggle to get enough oxygen or remove enough carbon dioxide.

You would also need to be currently receiving some form of breathing support. This includes using a non-invasive ventilation machine (like a mask that helps you breathe), a prolonged mechanical ventilation machine (a breathing machine often used more continuously), or a therapy called mechanical insufflation-exsufflation, which helps clear your airways.

There are a few reasons why someone might not be able to join. You need to be at least 18 years old. Also, if you have other significant physical or mental health conditions that would make it very difficult for you to follow the study's instructions or complete questionnaires, then this study might not be suitable for you. This is to make sure your participation is as straightforward and safe as possible.

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.

Do you have chronic respiratory failure (long-term breathing problems)?
Are you currently using a breathing support machine (like non-invasive ventilation)?
Are you 18 years old or older?
Do you feel you could complete questionnaires without significant difficulty due to other health issues?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, your involvement would mainly be through completing questionnaires. These questionnaires are designed to gather information about your health, how you feel, and how your breathing condition affects your daily life. There will be no new medication given as part of this study. You will continue to take any medicines prescribed by your own doctor. There are no extra doctor visits required beyond your usual care. The total time you'd be involved in the study would depend on how many questionnaires there are and how long each takes to complete, but it is not expected to be a long-term commitment. All sessions and questionnaires would be clearly explained to you.

Potential risks and benefits

The main benefit of taking part is helping medical professionals better understand how chronic breathing problems affect people's lives and how treatments can help. This knowledge can lead to improved care for future patients. There are no significant risks expected with this study, as it only involves completing questionnaires and does not involve any changes to your treatment or daily routine. You are free to withdraw from the study at any time, for any reason, without it affecting your usual medical care.

Locations (1)

Guy's and St. Thomas NHS Foundation Trust
Verified postcode
London, United Kingdom· Recruiting

Common questions

What exactly is 'chronic respiratory failure'?

It's a long-term condition where your lungs can't get enough oxygen into your blood or remove enough carbon dioxide, making it hard to breathe.

Will I have to take new medicines?

No, this study does not involve any new medicines. You will continue with your usual treatments as prescribed by your doctor.

How long will I be involved if I join?

Your involvement will mainly be completing questionnaires. The time spent will depend on the number and length of these, but it's not a long-term commitment.

Will this study change my current treatment?

No, your current treatments or care will not be changed or affected by taking part in this study.

What kind of questions will be in the questionnaires?

The questions will be about your health, how you're feeling, and how your breathing condition affects your daily activities and overall well-being.

How to find out more

Neeraj Shah, MBBS

neeraj.shah@gstt.nhs.uk +442071888070 Official trial record

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