The changing demography of the cystic fibrosis population: forecasting future numbers of adults in the UK.

Ruth H Keogh ORCID logo; Kamaryn Tanner ORCID logo; Nicholas J Simmonds; Diana Bilton; (2020) The changing demography of the cystic fibrosis population: forecasting future numbers of adults in the UK. Scientific reports, 10 (1). 10660-. DOI: 10.1038/s41598-020-67353-3
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Improvements in management of cystic fibrosis (CF) through specialist centres in the UK have been associated with a step-change in life expectancy. With increasing numbers of adult patients there is a need to review health care provision to ensure it is sufficient to meet future needs. We used UK CF Registry data to project the number of patients aged 16-17 and 18 and older  up to 2030, and numbers therefore requiring specialist adult CF care. Survival modelling was used to estimate age-specific mortality rates. New-diagnosis rates were estimated using diagnoses observed in the Registry and national population figures. Uncertainty in projections was captured through 95% prediction intervals (PI). The number of adults (aged 18 and older) is expected to increase by 28% from 6,225 in 2017 to 7,988 in 2030 (95% PI 7,803-8,169), assuming current mortality rates. If mortality rates improve at the rate seen over recent years, the projected number increases to 8,579 (95% PI 8,386-8,764). The age distribution is also expected to change, with 36% of CF adults being over 40 in 2030, versus 21% in 2017. There is an urgent requirement to review adult CF health care provision, due to both increasing numbers and the changing care needs of an older population.


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