Cystic Fibrosis

Cystic Fibrosis

In Cystic Fibrosis care there are many situations where we do not know which treatment is best.  When the Cystic Fibrosis PSP began its work in early 2016, it estimated that there were over 300 important research questions about cystic fibrosis treatment which were unanswered at the time. The PSP wanted to make sure that the priorities of patients, carers and clinicians were not overlooked in future research.

The Cystic Fibrosis PSP published its Top 10 in January 2017.  Read more about the results in this press release.

After the success of the PSP, a second continuation phase is being carried out to take a more in-depth look at four of the Top 10 priorities to find out what they mean to the people living and working with cystic fibrosis. The results will be used to formulate more specific research questions which are meaningful to the cystic fibrosis community. 

The PSP has now completed the surveys for priorities 1, 2 and 7.  They received 946 responses talking about how patients and carers view treatment burden (priority 1) and have run a focus group to follow up on this.

The fourth survey asking about motivation, support and technologies to help improve adherence to treatment was open until April 2019.

Once this part of the work is complete, the PSP hopes to have a list of testable research questions that will go back out to the Cystic Fibrosis community for prioritisation. 

See news from this PSP: December 2018

Professor Alan Smyth explains the need for a
Priority Setting Partnership in Cystic Fibrosis

 

How the top 10 priorities were identifed

 

Key document downloads