Understanding the Effects of Hospitalisation in Adult Cystic Fibrosis (CF) Patients.

Participant information You are invited to take part in a study which aims to examine how adults with cystic fibrosis are affected by spending time in hospital and the roles coping and social support play. In recent years medical advances have meant that life expectancies of people with cystic fibrosis have increased dramatically. This inevitably has resulted regular stays in hospital receiving treatment, often far away from family and friends. It is therefore very important for us to begin to understand how these frequent hospital admissions affect adults with cystic fibrosis. The study will recruit participants who are aged 18 and over and who suffer from cystic fibrosis from around the UK. Participants will be asked to complete a one off questionnaire which will examine quality of life in people living with cystic fibrosis and will include both multiple choice and some open ended questions. The questionnaire can be completed at any time including during hospital admissions (where facilities are available). It will take around 30 minutes to complete, but you will be able to take breaks at any time whilst completing it. Questionnaires should be completed as honestly as possible -there are no right or wrong answers. It is hoped that the results of the study will help to inform future developments in the provision of care for people with cystic fibrosis. Participation in the study is completely voluntary and any information you provide will be confidential. Should you have any questions regarding any aspect of the study please feel free to contact the researcher at l.myers1@unimail.derby.ac.uk or the study supervisor Rebecca Knibb at r.c.knibb@derby.ac.uk however please note that it will not be possible to give advice beyond the realm of the study and in the event that it is required you should contact a member of your health care team. If you do decide to proceed with the study but later change your mind, you free to withdraw by contacting the researcher anytime up to 2 weeks after participation in the study and will not be required to provide a reason for your withdrawal. If you decide you wish to take part in the study please complete the consent below and create an ID code which you will remember and will enable your information to be identified should you later wish to withdraw. This should be done by combining your initials with the day in the month that you were born and the last 2 digits of your phone number. E.g. DP0692



Thank you for your interest in taking part in this study