Parents as equal partners in the paediatric cystic fibrosis multidisciplinary team

Abstract

There is currently no cure for cystic fibrosis (CF). Notwithstanding that, over the past 10 years there have been great improvements in the health status, life expectancy and therefore quality of life for people with CF. There is no single breakthrough in care that has made this difference but rather the introduction of small incremental changes and a new ethos of care. These include better surveillance of lung disease, better recognition of symptoms, tailored antibiotic therapy, a better understanding of the role of inflammation and infection on the lung and improved nutrition. The importance of caring for the vital childhood years to secure a better longterm future has mobilized CF teams to adopt programmes of early intervention and vigilance. There is good reason to maintain optimism with genetic and specific mutation research gathering pace and offering opportunity to halt deteriorating lung disease. But it is hard work for all involved.