Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.

ABSTRACT: Cystic fibrosis (CF) is the one of the most common inherited diseases. It affects around 10,000 people in the UK, and the median survival age is 47. Recent developments making use of longitudinal patient registry data are producing more detailed and relevant information about predicted life expectancy in CF based on current age and clinical measurements. The objective of this study was toconduct an online survey of adults with CF living in the UK using a web-based questionnaire to investigate: (i) if and how they access information on life expectancy; (ii) what they use it for; (iii) if they want more personalised information on life expectancy or the time until other milestones. The survey was advertised through the Cystic Fibrosis Trust using social media. There were 85 respondents, cove

SUBMITTER: Keogh RH 

PROVIDER: S-EPMC6461271 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature