What next?
What next?
About this study
There is research available on wellbeing and social needs for people with chronic respiratory illnesses such as COPD. However, to date, research is lacking when looking at mental health and wellbeing factors for people living with idiopathic pulmonary fibrosis (IPF), particularly in Ireland.
This study aims to collect information in the form of an online survey. The survey consists of twelve questions, the majority of which are multiple-choice. The survey is designed to be completed in twenty minutes. Information that specifically identifies who someone is, will not be collected when taking part, and all data will be stored according to GDPR guidelines.
The aims to:
- To understand more about the mental health and wellbeing of people living with IPF in Ireland.
- To document the social support needs of people living with IPF in Ireland.
- To explore factors that predict the mental health and wellbeing of people living with IPF in Ireland. This will include perceived social support, illness perceptions, and coping strategies.
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?
You will be requested to complete an online survey. This is estimated to take around 20 minutes or less. The survey is largely multiple choice, and will ask about your experiences with IPF symptoms, other physical and mental health conditions, health-related and general wellbeing experience, and any mental health symptoms. There are some questions that will ask about specific mental health symptoms and this may be sensitive as a result. At any point prior to submitting the online form, you can choose to exit the study, and your data will not be saved.
Summary of involvement
20 minute online survey
Can I take part?
You may be able to take part if you have a confirmed diagnosis of IPF and are living in Ireland.
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 the main criteria 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 have received a medical diagnosis of IPF at least 6 months ago
You will need English proficiency to be able to complete the online form
You must be an Irish resident (Republic of Ireland/Northern Ireland)
You don't have a diagnosis of IPF
You recieved your diagnosis of IPF within the last 6 months
You are not an Irish resident
What difference could taking part make?
Little research is available on the psychological experiences and mental health needs of people living with IPF in Ireland. It has previously been suggested that people with IPF in Ireland have numerous health and social concerns about their condition. This study aims to further investigate this and consider the relationship between specific psychological factors and mental health and wellbeing in IPF. This study will help to capture the needs of people with IPF in Ireland and help to understand more about the care and services that are most suitable and needed.
Where does the study take place?
Study locations
Northern Ireland (online only)
Republic of Ireland (online only)
This study is only suitable for those living in Ireland.
How to take part
If you would like to take part in the survey, please contact Alisa by email: alice.oriol@ucdconnect.ie
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.
alice.oriol@ucdconnect.ieThis study is supported by
This page provides a lay summary of the research study and does not contain all the information needed to inform decisions about taking part. Please speak to your medical team or the study research team in relation to specific details about the study.
Action for Pulmonary Fibrosis does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators. Every effort is made to ensure that these details are correct and are kept up to date. If you are aware of any inaccuracies, please email research@actionpf.org