In July 2016 I conducted the following survey:
“Online survey to gain understanding of what people with cystic fibrosis aged 16+ would like to learn about their life expectancy and other outcomes”
Thank you to everyone who took the time to complete the questionnaire.
Information on the results can be found here: http://blogs.lshtm.ac.uk/ruthkeogh/cf-online-questionnaire-results/
You can view the protocol for this study here: CFQ_proposal_2016
A pdf version of the questionnaire is available here: CF-questionnaire-2016
The results from this survey will be used in a number of ways, including:
- To inform the use of data from the UK Cystic Fibrosis Registry in future research
- To inform CF care teams about how people are thinking about issues relating to their life expectancy
- As part of my research I wish to contribute to improving how information on life expectancy is presented to people with CF. This was the motivation for developing this questionnaire.