Background: Cystic fibrosis (CF) is a life-limiting, multisystem disorder and treatment regimens are complex. With limited resources, research should focus on questions that are most important to the CF community.
Objectives: To conduct a James Lind Alliance (JLA) Priority Setting Partnership (PSP) to produce a list of unanswered questions about CF treatment jointly with patients, their families and healthcare professionals. To prioritise these questions to give a top ten.
Methods: A steering group was set up to guide the project and was represented by people with CF, parents of children with CF and healthcare professionals working with CF. An online survey was launched to ask the CF community “What question on cystic fibrosis would you like to see answered by research?”. Submitted questions were collated and checked against the existing evidence. The steering group undertook a Delphi assessment of the resulting questions to produce a shorter list for prioritisation. A second online survey asked the CF community to rank their top ten questions.
The top 20 questions chosen through this survey were taken to a final workshop. Lay and professional participants, all with equal voice and led by three independent JLA facilitators, selected the final top ten research priorities. Videoconferencing was used throughout the process to allow participation of people with CF without risking cross-infection.
Results: A total of 513 individuals responded to our first survey with a total of 1122 questions given; 677
people completed the second survey. In both surveys, approximately half of respondents were from the
patient community and half were healthcare professionals. The final workshop was attended by 25 participants including eight patient representatives and 17 healthcare professionals. Six participants joined the workshop via videoconference. After small and whole group discussions, the top ten priorities were agreed. See Figure 1
Conclusions: This exercise engaged the CF community and has allowed people with CF and their families to participate equally with healthcare professionals to agree on the top ten priorities for research in CF.
Patient or healthcare consumer involvement: Patients, their families and healthcare professionals were involved on an equal footing in all aspects of this exercise from planning to deciding the final top ten.