"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study looking at developing ways to help people looking after someone with breathlessness (LaB)
This study looked at developing ways of giving information to help friends and family learn how to help and support people living with breathlessness.
More about this trial
Breathlessness is common in people who have cancer that has spread or have a lung condition such as chronic obstructive pulmonary disease (COPD).
People with breathlessness caused by cancer and people with breathlessness caused by COPD can have different needs. And the information that friends and family need may be different too.
In this study, the researchers wanted to know what friends and family members want to learn about breathlessness caused by the different conditions. And the way in which they would like to learn.
The aim of the study was to use this information to develop a way of helping family and friends support somebody living with breathlessness.
Summary of results
The research team found out what carers would like to know, and developed material for a website to help them learn more about breathlessness.
The study was done in 4 stages. It recruited people between 2014 and 2015, and the results were published in 2017.
The research team talked to 25 patients and their carers to find out what they wanted to know, and how they wanted to get the information. They found that carers needs fell into 6 main areas. Carers wanted to learn more about:
- the causes of breathlessness, and how to cope with caring for someone who is breathless
- how to help when the patient is anxious, panicking or breathless
- how to avoid and treat infections, and when to ask for help
- the best way to keep active, including examples of exercise
- how to encourage the patient to be positive despite being restricted with where they can go or what they can do
- what to expect in the future and how breathlessness may change over time
Some people said they would prefer to get the information in a group, some face-to-face. Some said they would prefer information and advice from doctors, some from other carers who had been in the same position.
The research team planned to develop a website that they hoped would help give everyone the information they needed. It would include written information about a number of different topics, and pictures and videos by health care professionals and other carers.
The aim was that people could either access it:
- in their own at home
- as part of a group with other carers
- as part of a group with a health care professional
- as a one-to-one session with a health care professional
The research team held a workshop with 13 health care professionals to discuss the findings of Stage 1. They agreed with the 6 points and suggested information that would be good to include for each one.
The research team developed material for a website looking at the first 5 points from Stage 1. They held workshops with 17 patients and carers to find out what they thought of the material, and what could be improved.
The subject of what to expect in the future (point 6) is more complicated and they plan to explore this further in a new study called LaB2. Their research so far has shown that people with COPD have slightly different needs to those with advanced cancer. But there are some issues that affect both groups.
The patients and carers generally agreed with the points from Stage 1. They suggested some changes to the information on the proposed website.
The research team asked 365 health care professionals about the information they give to patients and carers about breathlessness. They also asked whether they thought a specific educational resource would be useful.
The health care professionals agreed that there wasn’t any research-based information available to help carers cope with someone who is breathless. Most felt that carers got information as part of the discussion with the patient, rather than having information for themselves. Most thought that a new information tool would be useful.
They also identified the patient and carer issues the research team should measure when they test the web based information in the next study (LaB2).
The research team found out what carers want to know about caring for someone with breathlessness. They developed material for a website that could help people in this situation. They hope to continue this research with another study to develop and test the website.
We have based this summary on information from the research team. The information they sent us has been reviewed by independent specialists (
How to join a clinical trial
Dr Morag Farquhar
Cambridge University Hospitals NHS Foundation Trust
Dimbleby Cancer Care
NIHR Primary Care Research Network
University of Cambridge