Page 144 - Let them speak Towards a patient reported outcome measure set for

Chapter 6
why a PRO should always be discussed or treated, nor to respond to its
conceptualisation or suggest additional PROs.
Analyses
The results of the Delphi surveys were analysed for each participant group
in Microsoft Excel. Given the considerable diversity and variability within
and between genetic subgroups, we anticipated a wide range of relevant
PROs for this population group. For this reason, the consensus threshold
was set lower, namely at 60% or more of all participant groups responding
‘Yes’ to include a PRO in the final generic core PRO set, compared with
the 67%-70% threshold often used in other studies (Harman et al., 2015,
Mokkink et al., 2020, Prinsen et al., 2018). If 60% or more of all participant
groups responded ‘No’ for a PRO, it was not included in the final generic
core PRO set. When consensus had not been reached on a PRO, it was
discussed during the consensus meetings.
Consensus meetings
Two consensus meetings were organised in May 2024 to reach consensus
on the remaining PROs: one online consensus meeting with individuals with
GID and caregivers conducted in Dutch, and one online consensus meeting
with experts (i.e., international healthcare professionals and patient
representatives) conducted in English. The two consensus meetings
were conducted separately to ensure that the perspectives of individuals
and caregivers were sufficiently heard without being overshadowed by
those of experts. At the end of Delphi round two, participants were asked
if they wanted to participate in an online consensus meeting. If too few
participants indicated that they wished to participate in the online consensus
meeting (i.e., less than three individuals of one of the participant groups),
additional individuals with GID, caregivers, and experts were recruited via
healthcare or patient organizations, as participation in the Delphi study is
not a requirement for attending a consensus meeting (Williamson et al.,
2017). During the consensus meetings, the remaining PROs (i.e., on which
consensus had not yet been reached after Delphi round two) were shown
again to participants in order of importance in a PowerPoint presentation,
from most important (i.e., highest consensus on importance/lowest
consensus on unimportance) to least important (i.e., lowest consensus
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