RecruitingNAINTERVENTIONAL

Reducing Chronic Breathlessness in Adults by Following a Self-guided, Internet Based Supportive Intervention (SELF-BREATHE)

Living with long-term breathlessness can be very tough. This study, called SELF-BREATHE, is testing a new website designed to help people manage their breathing difficulties from home. It's for adults who experience breathlessness due to conditions like COPD, asthma, or lung cancer. The website, developed with patients, offers information and self-help tools like breathing exercises. Researchers want to find out if using SELF-BREATHE for six weeks improves how people feel, reduces their breathlessness, and lessens the need for hospital visits. They will compare those using the website plus their usual care with those receiving only usual care. The goal is to see if this online support could become a helpful part of NHS care.

At a glance

Status

Recruiting

Phase

Sponsor

King's College Hospital NHS Trust

Enrolment target

246

Start

04 Jul 2024

Estimated completion

01 Jul 2028

Chronic Obstructive Pulmonary Disease Bronchiectasis Interstitial Lung Disease Lung Cancer Asthma Dyspnea Fibrotic Lung Disease Chronic Lung Disease

What is this study about?

Many people in the UK live with chronic breathlessness, which means they feel out of breath often. This can be very upsetting, making everyday tasks hard and sometimes leading to feelings of loneliness or anxiety. Sometimes, people with severe breathlessness visit A&E departments because they don't have enough support elsewhere.

The NHS faces many challenges, including long waiting times, so finding new ways to help people is very important. Since many people use the internet, an online tool could be a great solution. That's why a team of researchers, led by Dr. Charles Reilly and with help from patients, created a website called SELF-BREATHE. This website gives people information and tools, like exercises, to help them manage their breathlessness at home.

SELF-BREATHE has already been tested a little and people found it helpful. Now, this study wants to find out if using SELF-BREATHE really makes a difference to people's breathing and their overall quality of life. It also aims to see if the website could be a useful part of the support offered by the NHS.

Key takeaways

The study aims to help people with long-term breathlessness.
It tests an online tool called SELF-BREATHE for managing breathing difficulties.
Participation involves completing questionnaires over a 12-week period.
You might get access to the SELF-BREATHE website, or continue with your usual care.
The goal is to see if online support can improve breathlessness and reduce hospital visits.

Who may be eligible?

This study is looking for adults who are 18 years or older and experience long-term breathlessness. This means breathlessness that has lasted for more than three months, even with existing medical treatments for conditions like COPD, asthma, or certain lung diseases. You should feel short of breath when hurrying or walking up a slight hill, or even at rest. You also need to have access to a computer, tablet, or smartphone with internet for the study, and be able to understand and agree to take part.

You cannot join the study if your breathlessness doesn't have a clear cause or if you've been told you have chronic hyperventilation syndrome as your main problem. Also, if you're currently in a special rehabilitation programme for your lungs or heart, you won't be able to join. However, if you finished such a programme more than four weeks ago, you might still be eligible.

Quick self-check

Are you 18 years old or older?
Do you experience breathlessness that has lasted more than 3 months?
Can you easily get online using a computer, tablet, or smartphone?
Are you currently NOT taking part in a lung or heart rehab program (or finished one more than 4 weeks ago)?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you join this study, a computer will randomly pick for you to either continue with your usual medical care, or, in addition to your usual care, you'll also get access to the SELF-BREATHE website. You won't know which group you're in until after you're enrolled. You'll fill out some questionnaires at the very beginning of the study. Then, you'll complete two more sets of questionnaires about seven weeks and twelve weeks later. These questionnaires will ask about your breathlessness and how it affects your life, as well as any planned or unplanned hospital visits you might have had. The total time you'll be involved in the study is about twelve weeks.

Potential risks and benefits

Taking part in the study might offer the benefit of learning new ways to manage your breathlessness through the SELF-BREATHE website, potentially improving your daily life and reducing hospital visits. For those not getting access to the site immediately, your usual care will continue as normal. There are no known physical risks from participating, but completing questionnaires takes some time. Remember, your participation is completely voluntary, and you have the right to withdraw from the study at any time without affecting your usual medical care.

Locations (1)

King's College Hospital NHS Foundation Trust
London, United Kingdom· Recruiting

Common questions

What is chronic breathlessness?

Chronic breathlessness means feeling out of breath often, usually for more than three months, even with your regular medication.

What is SELF-BREATHE?

SELF-BREATHE is a website that offers information and tools, like breathing exercises, to help people manage their breathlessness at home.

Will I definitely get to use the SELF-BREATHE website?

If you join, a computer will randomly decide if you get access to the website or continue with just your usual care. It's like flipping a coin.

How long will the study last for me?

You will be part of the study for about 12 weeks, completing questionnaires at the start, seven weeks, and twelve weeks.

What kind of questions will I be asked?

The questionnaires will ask about your breathlessness, how it affects your life, and any hospital visits you've had.

How to find out more

Charles C Reilly, PhD,MSc,BSc

charles.reilly@nhs.net 00442032998062 Official trial record

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