Engagement with our PPIE advisory panel (AP)
RECRUITMENT
Although we had engaged with stakeholders from the inception of the study, our full AP was not established until after some of the key trial design decisions (e.g. research questions, interventions and design) had been taken.As recruitment and consent challenges became evident, we dedicated time in February 2020 to discuss this at an AP meeting, with seven parents present. They discussed and expressed a range of opinions about how parent preference for treatment/non-treatment was likely to be an important factor influencing trial participation. One parent proposed that medicine randomisation “The TMG requested further input from the AP about their perspectives on the potential of an alternative design proposing a Patient Preference Trial (PPT) design focusing solely on the sleep behaviour intervention but without the comparison between carbamazepine and levetiracetam. A remote AP meeting was held with 11 parents and five children to explore their views on the proposed PPT design and ensure their expert feedback informed any proposed design. All the parents unanimously reported that the proposed PPT design was more acceptable to them than the original trial design as it was “The increased focus on sleep in the proposed PPT trial design was deemed important with parents highlighting how “