Cystic Fibrosis: PSP 2

Cystic Fibrosis: PSP 2

The Cystic Fibrosis PSP, which published its Top 10 in January 2017, has been continuing its work to make sure that researchers and research funders know the questions that really matter to those living with Cystic Fibrosis and the people who treat them.

Sherie Smith, project coordinator of the PSP says:

“The aim of the continuation of our James Lind Alliance Priority Setting Partnership in Cystic Fibrosis is to take four of the Top 10 priorities and look at them in more depth in order to develop testable research questions. The four Top 10 priorities chosen by the Steering group are:

• What are the effective ways of simplifying the treatment burden of people with Cystic Fibrosis? (Priority 1 from the Top 10)
• How can we relive gastro-intestinal (GI) symptoms, such as stomach pain, bloating and nausea in people with Cystic Fibrosis (Priority 2 from the Top 10)
• What effective ways of motivation, support and technologies help people with Cystic Fibrosis improve and sustain adherence to treatment? (Priority 6 from the Top 10)
• Can exercise replace chest physiotherapy for people with Cystic Fibrosis (Priority 7 from the Top 10)

For each of the four priorities we are distributing an online survey to the Cystic Fibrosis community via Twitter and sending it to participants in our earlier work who expressed an interest in continuing to help us. The surveys ask more about that particular priority and what the current situation is for patients and carers around each one.  They lead on to a series of focus groups of people with Cystic Fibrosis, parents, other relatives and healthcare professionals to try to identify more specific research questions within each priority that can be taken forward to funders of research.

Timeline (February 2018 – July 2019)

We have completed the surveys for priorities 1 and 2.  We 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 third survey is open until Sunday 6^th January 2019, asking about patients’ and carers’ current approach to exercise and chest physiotherapy. The fourth survey will go out after Christmas and we will run three further focus groups in the New Year.

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

Follow the PSP on Twitter https://twitter.com/questionCF to see how this work continues to develop.