What are the experiences and perceptions of breathlessness in COPD patients?

The most common symptom in COPD is breathlessness. This is due to the swelling and narrowing of the airways, making it harder to move air in and out. The aim of this study is to interview people with COPD to gain insight into what it feels like to live with breathlessness. As this will help improve our knowledge and help shape future treatments for COPD, which could be offered on the NHS.

You have been invited to take part because you have a diagnosis of COPD and experience breathlessness.

No, it is up to you to decide whether to take part or not. If you have any questions about the study, please contact the researcher who will be happy to help. If you do decide to take part, you will be given this information sheet to keep. Before the interview you will be asked to sign a consent form (hard copy or online, depending on your preference) and then fill out the diversity and inclusion survey. You can withdraw from the study at any time, including during the interview. You do not have to give a reason for withdrawing from the study. You can also withdraw from the study up to 7 days after completion of the interview by contacting the researcher j.greenwood17@edu.salford.ac.uk directly.  When contacting the researcher in this instance, please specify if you would like your data to still be included in the study or all your data to be permanently deleted.

In the event you want to stop participating mid-interview, the researcher will ask if you want to take a break, stop completely, or withdraw from the study. If you would like to withdraw from the study mid-interview, the researcher will ask if you want your data to be included in the research study or if you would like all your data to be permanently deleted.

If you are considering taking part in the study, you should provide details to allow us to understand if you are eligible. Such as, a diagnosis of COPD and confirm you have had an annual review in the past year. This can be done via an online form or over the phone, please specify your preference when you contact the researcher using the details below. If you complete the online form and you are not eligible, you will receive an email from the research team.

If you are eligible, the researcher will contact you and send you a consent form. The consent form can be sent via email, to be filled out and sent back. Or you can ask the researcher to send a paper copy. The paper copy would need to be filled out and sent back to the researcher. This can be done via post, or you can take a picture and send it back via email. Once consent has been obtained, a mutually convenient date and time will be set for the interview. Interviews will be conducted on Microsoft Teams or face-to-face on the university campus and will be recorded on the computer.

The study will consist of a semi-structured interview. This will be approximately 20 questions. The interview will last approximately 60 minutes. It will focus on your experience and feeling around breathlessness and your experience of living with COPD. The questions will surround topics such as ‘Could you describe how your breathing feels to you?’ and ‘How would you describe your breathlessness?’.

The researcher will also collect personal data such as age, religion, and ethnicity. You do not need to provide these details, if you are not comfortable to do so. This type of data is collected to ensure we have a representative sample of people with COPD and is important for our understanding. Please note, this data will only be collected once you have signed the consent form.

There are no right or wrong answers to the questions asked. The researcher simply seeks to gain an understanding of how you experience breathlessness. Once the interview has been written out by the researcher, the original recording will be permanently deleted. This means you will not be able to be identified from the written information.

You will be entered in a £50 voucher prize draw. This will be between 15-25 people so there will be a 4-6% chance that you will win this prize. If you do not want to be entered in the prize draw, please let the researcher know (this will be asked again at the end of the interview). You will be required to provide your email address so that the researcher can contact you if you are the winner.

This is a very simple and straight forward study. The researcher will be interviewing you and will take any breaks you feel necessary. There is a small chance that you may become uncomfortable and/or upset when discussing your experiences of being breathless. In this case you can choose not to answer the question, stop the interview, or withdraw from the study.

You will not clinically benefit from this study. Your participation in this study will help us get an increased understanding of breathlessness in COPD and could help us develop new treatments.

This study is being led (and sponsored) by the University of Salford.

Only the researcher will be able to see your name or contact details. Your data will have a code number instead.The University of Salfordis responsible for looking after your information. We will share your information related to this research project with other universities. We will keep all information about you safe and secure by ensuring it is saved on password protected computers within encrypted files. Your data will not be shared outside the UK.

Once the study is complete, the researcher will keep some of the data so they can write the results. The researcher will write the results in a way that no-one can work out that you took part in the study. The researcher will keep your study data for a maximum of 3 of years. The study data will then be fully anonymised and securely archived or destroyed. The researcher is happy to send each participant in the study a summary of the results. Please indicate on the consent form if you would like to receive this summary and confirm that you are happy for the researcher to retain your contact information for 3 years to allow them to send this information to you. From the interview the researcher will use anonymised quotes when writing up the results.  No identifiable data will be kept after the end of the study (apart from contact details if you would like a summary of the results).

You can stop being part of the study at any time, without giving a reason. The researcher will keep information about you that they already have, but you have the right to ask us to access, remove, change or delete data we hold about you for the purposes of the study. You can also object to our processing of your data. Once the interview has been completed you have up to 7 days to withdraw your interview data from the study. After this window the researcher will not be able to do so. If you want to withdraw, please notify the study representative listed in the “Further information and contact details” section below.

You can find out more about how we use your information at https://www.salford.ac.uk/privacy or by asking one of the research team.

If you have a concern about any aspect of this study, you should email the researcher (provided below), who will do their best to answer your questions. Following this, if you have any issues or complaints, you may contact the research supervisors Dr Emma Swift by email e.j.swift@salford.ac.uk or Professor Stephen Preece s.preece@salford.ac.uk. If the matter is still not resolved, please forward your concerns to Graeme Sherriff, co-chair of research ethics g.sherriff@salford.ac.uk, or Katy Szczepura, co-chair of research ethics K.Szczepura@salford.ac.uk.

If you have any further questions, want to participate, or if you are already participating and want to withdraw, please contact:

Email:  j.greenwood17@edu.salford.ac.uk

Tel: TBC

If you would like to seek any further support, please go through the links below:

Title: Asthma and Lung UK

Webpage: https://www.asthmaandlung.org.uk/living-with?

Contact details: 0300 222 5800

Title: Breathe Easy Support Groups

Webpage: https://www.nhs.uk/service-search/other-health-services/breathe-easy-support-groups/

Contact details: 0300 222 5800

Title: NHS service

Webpage: https://www.nhs.uk/conditions/chronic-obstructive-pulmonary-disease-copd/

Title: MIND

Webpage: https://www.mind.org.uk/

Contact details: 0300 102 1234