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Candid views on life expectancy

Cystic fibrosis community shares its views on finding out about life expectancy and other outcomes.

A recent survey shared by the Cystic Fibrosis Trust on behalf of Dr Ruth Keogh of the London School of Hygiene and Tropical Medicine has shed light on the attitudes of people with cystic fibrosis (CF) toward sensitive topics such as life expectancy and health milestones. 

The results show that 76% of people surveyed had sought information on life expectancy in cystic fibrosis. However, only 25%reported having been provided with any such information as part of their routine care. While 27% had actively sought this information from their CF care team, 87% of those who hadn’t thought there might be a time in the future when they would want to. 

The survey also showed that 71% of people had sought information on life expectancy from sources that were not their CF clinicians, including 41% who had sought information from the Cystic Fibrosis Trust website or reports.

Those that had received  information about life expectancy in CF said they used it to plan strategies for staying in good health, for psychologically managing their current health status and planning things such as starting a family, education, how they spend their leisure time and their career paths. 

The results will be used to design guidance for analysing and presenting data from the UK Cystic Fibrosis Registry to better inform people with cystic fibrosis about their future milestones.  

Ruth said: “I’d like to thank everyone who took part in the survey, particularly on such a sensitive topic. The information gathered will be invaluable in helping us give people the information they need in the way that they want. It’s clearly important to people that they receive the information at the right time for them, and more than 80% of respondents also showed an interest in more personalised information, such as how they are doing relative to people the same age as them. It’s certainly given us a lot to think about and I’m very grateful for the CF community being so candid in their responses.”

The survey was completed by 85 people, and the anonymised results are now available as a colourful summary (PDF). More detailed results can be found on Ruth’s blog. You can also read a feature by Ruth about why she thinks this research is so important.