Interim prioritisation survey

The aim of this survey was to prioritise the longlist of questions and produce a shortlist for the final priority setting workshop. The survey was composed online using SurveyMonkey. It was piloted by the steering group and distributed via the same channels as the first survey. It collected basic demographic data from its respondents (described in “Survey for question collection”) and asked to select the ten most important questions from the presented longlist, where their order was automatically randomised for each participant. Then, the respondent was able to rank the selected questions from the most to least important. The answers could be submitted from April to May 2018.

The survey responses were used to create a prioritised question longlist. In order to do so, four separate rankings were produced according to the type of respondent: 1) FD/MAS, 2) OI, 3) XLH patients and carers as well as 4) healthcare professionals. The rankings were combined to yield an overall ranking position for each question, which ensured equal representation of the four groups in the exercise. The top 25 questions were selected for proceeding to the final priority setting workshop.