Skip to main content

Report from the CASTLE Patient Advisory Group

Members of CASTLE’s Southern advisory panel met this month for the first time. This meeting is part of the programme’s family consultation/Patient Public Involvement work.  Our family Engagement Officer, Sam, welcomed dedicated parents Keith and Debbie to King’s College London. Over lunch they met Holly, one of our research workers, who explained what we were hoping to get out of the meeting. This meeting was dedicated to reviewing a Delphi Survey – the aim of which is to involve patients, parents, clinicians and researchers in choosing the most appropriate outcome measures to be used in our up-coming study to measure the impact of the trial intervention.

Debbie and Keith were asked to comment on the appropriateness of the outcomes including:

  • clarity
  • relevance
  • further suggested outcomes

CASTLE’s first advisory panel was a highly focused and productive meeting that enabled us to gain insight into parent’s understanding of the survey in its current form and suggestions were made for how it might be improved from their point of view. Overall, the survey seemed to accurately reflect appropriate outcome measures for this patient group from parent’s perspective.

There was an interesting discussion around the relationship between parent’s wellbeing and the health outcomes of their children. It was thought that these should not and could not be disconnected. Therefore, any research should be focused on the relationship between parents and the management of their child’s condition and vice-versa, even when parent’s health outcomes were not a direct focus of the research.

Read more about CASTLE here →