What next?
What next?
About this study
People with pulmonary fibrosis often experience breathlessness and shortness of breath. These symptoms are often distressing and have an impact on dairy life. Current management options are limited.
This study aims to find out if breathlessness management training can help people with pulmonary fibrosis.
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?
People who take part in the study will be randomly put into one of two groups.
Group 1: will have breathlessness management training within one week of starting the study (Fast-track Group)
Group 2: will wait eight weeks to receive the breathlessness management training (Wait-list Group)
Both groups will continue to have their usual care. You will visit your local hospital for an initial assessment and then attend three appointments for breathlessness management training. The first two appointments will be in person, and the third appointment will be a phone call. You will learn about different techniques that can help you to manage your breathlessness and you will also be given an information leaflet to help manage this at home.
Everyone taking part in the study will receive the training, but the timings of this will be different. You will also receive phone calls every 4 weeks during the first 16 weeks and then every 8 weeks for up to 1 year, to keep track of how you are coping.
Summary of involvement
Breathlessness management training
3 in person appointments and 1 phone call appointment for the training
Follow-up phone calls after the training to see how you are getting on
Can I take part?
Men and women aged 50 years or older with a diagnosis of pulmonary fibrosis may be able to take part.
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 without this effecting your usual care or treatment.
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.
You are aged 50 years and over
You have a diagnosis of pulmonary fibrosis
If you are receiving treatment for PF (with antifibrotic or immunomodulatory medication) you must have had the same dose for at least 1 month
You have a resting oxygen saturation of 90% or above, either with or without oxygen therapy
If you have a significant heart or lung disease other than PF that could be the main cause of breathlessness
You have had pulmonary rehabilitation within the last 3 months
You have been to a breathlessness clinic within the last 3 months or due to start in the next 16 weeks
You have had an acute exacerbation of your PF within the last 3 months
What difference could taking part make?
Taking part in this study will help researchers to understand if specific breathlessness management training will help people with pulmonary fibrosis to manage their symptoms. This study will help doctors and policymakers to understand what the best treatment options are.
Where does the study take place?
Study locations
Hull
Birmingham
Leeds
Fife
Bristol
Exeter
Leicester
Antrim
Wolverhampton
Southampton
Great Yarmouth
Manchester
Edinburgh
Londonderry
Cambridge
Please note that some of the sites are still in the set-up stage, and not yet recruiting.
How to take part
If you are interested in taking part in research related to your pulmonary fibrosis diagnosis, please speak to your healthcare team about the different opportunities available to you.
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.
This 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