What next?
What next?
About this study
Pulmonary fibrosis can cause chronic breathlessness which makes breathing difficult and cause a significant impact on daily life and activities. There is currently a lack of supportive services for people experiencing chronic breathlessness and this can lead to frequent Accident and Emergency (A&E) hospital visits with people seeking help.
An online supportive breathlessness website called SELF-BREATHE has been developed by a research team. The website contains supportive information and self-management tools that people with chronic breathlessness can do at home themselves.
The aim of the study if to find out if using SELF-BREATHE can help peoples' breathlessness, and improve their quality of life.
There are many different types of research. These studies might ask participants to test different treatments, devices, or complete questionnaires. Some studies may not require any involvement from people affected by PF, but instead look at cells in a lab environment, animal models, or utilise computer modelling.
A study involving people can be:
- Interventional – participants are given an active treatment decided by researchers. This could be a change in medication or lifestyle (e.g. exercise, diet, complementary wellbeing therapy, or symptom management). These are commonly known as clinical trials.
- Observational – participants are assessed for specific changes over time, but researchers do not alter their standard treatment or care (e.g. questionnaires to understand the impact of symptom, or patient registries that track trends in how disease affects people or the services that are provided).
There are 3 main phases of clinical trials:
- Phase 1 is the earliest stage of research, where there is often a focus on understanding if the treatment is safe or if it causes any side effects.
- Phase 2 still focuses on safety and side effects, but also tries to find out more about what is the best dose.
- Phase 3 often compares the new treatment to existing treatments or lookalike medications.
As drugs or interventions move into the different phases, the number of people taking part will increase. Not all studies will make it to the later phases, especially if the intervention is not found to be safe or effective in phase 1 and 2.
The recruitment aim is the number of people that researcher want to take part in the research study.
What is involved?
A computer will randomly assign you to one of two groups.
- Group one: you will continue with your usual care
- Group two: you receive your usual care plus have access to the SELF-BREATHE website resources.
You will be asked to fill in some questionnaires at the start of the study, and again at 7 and 12 weeks after the study started. The questionnaires will ask how breathlessness impacts your life, and about any planned or unplanned hospital visits. Once the study has ended, the researchers will compare the answers to the questionnaires and see if there are any differences between the two groups.
Summary of involvement
Participation for 12 weeks
You will either receive:
Your standard care OR your standard care plus SELF-BREATHE
Questionnaires
Can I take part?
You may be able to take part if you are aged 18 years and over, and experience chronic breathlessness as a result of chronic lung disease, such as pulmonary fibrosis.
In research 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 (see list below). Only the research team will be able to fully determine whether you are able to take part in the study. You can withdraw at any point.
If you are not able to take part in this research study, there may be other opportunities for you to take part in different studies.
To find out more about other research opportunities visit our research finder main page.
Aged 18 years and over
Chronic breathlessness at rest and/or during activity
Diagnosis of a chronic lung disease, such as pulmonary fibrosis
Access to a computer, tablet or smart phone that has internet
Breathlessness of unknown cause
Diagnosis of chronic hyperventilation syndrome
Currently taking part in a rehabilitation programme, such as pulmonary rehabilitation
What difference could taking part make?
Taking part in this study will help researchers to understand if the SELF-BREATHE website and breathlessness management tools help to improve breathlessness and reduce unplanned hospital visits, such as visiting A&E due to breathlessness.
Where does the study take place?
Study locations
King's College Hospital NHS Foundation Trust
How to take part
You may be able to take part if you are receiving care at King's College Hospital. If you are interested in taking part in research, please speak to your healthcare team.
Further information
This page is a summary which provides information about an opportunity to participate in research. More detailed information about the study can be found via the following the links and through contacting the research team.
If you have any questions about this research study, please speak to your medical team.
charles.reilly@nhs.netThis study is supported by
APF does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators.
Every effort is made to keep these details up to date. If you are aware of any inaccuracies, please email research@actionpf.org