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Participant Information Sheet (PIS)

Study Title: Evidence-based valuation of patient-centred outcomes in Cystic Fibrosis: The VALU-CF Study

IRAS Number: 258284

Invitation to participate in the above study:
We would like to invite you to take part in a research study on health outcomes, treatment burden and quality of life in cystic fibrosis (CF). Before you decide if you would like to take part, please take a moment to read the following carefully. Should you have any questions or you need any further information, please email Professor Siobhán Carr (the Principal Investigator) at: S.Carr@rbht.nhs.uk.

What is the purpose of the study?
This study aims to improve our ability to measure different patient-centred outcomes which reflect how people with CF experience their treatments and condition. We also aim to better understand any challenges people with CF perceive in managing their treatments and how their treatments affect their everyday life.

The information from this study will be used to help people, including health care decision-makers understand what treatment outcomes are most important for people with CF.

Do I have to take part?
It is up to you to decide whether or not to take part after having read this information. You are free to withdraw at any time and without giving a reason. A decision to withdraw at any time will not affect the care you receive in any way.

What does taking part involve?
Taking part involves completing this online survey. We estimate that this would take about 15-20 minutes of your time.

Before the survey begins, we will ask you to confirm that you have read and understood the information on this page and that you agree to participate by ticking the relevant box at the bottom of this page. Your responses will not be recorded unless you click on the 'Submit' button at the end of the survey. By ticking the consent box and submitting your responses, you will be giving your informed consent to use your responses for the purposes of the study.

We would like to link the information for this current study (VALU-CF) with your clinical data on the CF Registry, for which we will need you to enter your name and date of birth - but you do not have to consent to this to participate, and you may complete the survey completely anonymously if you prefer. After linking your CF Registry data, this personally identifiable data (name, date of birth), will be permanently deleted from the study dataset.

If you wish to stop participating in the survey, you can do so at any point before you submit your responses (for example, by closing your browser before submitting) and without giving a reason.

After agreeing to take part a series of questions will be asked in the survey mainly related to your CF, your health and the impact CF and the treatments you use have on your daily activity. Some of the questions will ask you to make hypothetical choices about different health or treatment options.

What are the possible benefits of taking part?
Your answers to the survey and interview will be used to get an overall picture of what are the treatment priorities for people with CF, how they perceive treatment burden and what are the most important factors that affect their quality of life. We will be able to provide evidence to decision-makers in the health system to help them prioritize the most important treatment benefits, ensuring these are appropriately considered in future funding decisions on CF treatments.

If you consent to linking your answer to this study your data on the CF Registry, we can also look at the reasons for any differences in quality of life and treatment outcome preferences between men and women, different ages and different treatment perspectives, and use them to make improvements to the care of people with Cystic Fibrosis. This anonymous information can be communicated to the wider CF and scientific communities.