Page 143 - Let them speak Towards a patient reported outcome measure set for

Establishing the core PRO set
decide whether a PRO should always be discussed during consultation or
provided treatment for. This formulation was intended to make the study’s
aim (reaching consensus on the most relevant PROs) more concrete. The
concepts of discussion and treatment were combined, as some PROs
may lack available treatments despite their relevance, while others may
be important to participants who nonetheless prefer not to discuss them
during consultations. Response options were ‘Yes’, ‘Unsure/I do not know’,
and ‘No’. These response options were chosen to keep the survey easy to
complete for individuals with ID. Participants were encouraged to elaborate
on their response in an open text field and could provide feedback on the
proposed conceptualisation of the PRO in an open text field. In the third
part, participants had the opportunity to suggest additional PROs that they
believed had not been considered in the pilot generic core PRO set and were
not among previously excluded PROs or other outcomes. If at least two
participants suggested the same modification to the conceptualisation of
a PRO or suggested the same additional PRO, it was included in the second
survey. No PROs were dropped in the first Delphi round to allow participants
to reassess the PROs and ensure their inclusion or exclusion during the
second Delphi round.
Round two
In the second survey, the pilot generic core PRO set, along with feedback
from the first round, was presented to the participants. PROs were
arranged in order of importance in the survey, from most important (i.e.,
highest consensus on importance/lowest consensus on unimportance) to
least important (i.e., lowest consensus on importance/highest consensus
on unimportance). For each PRO, the percentage of participants who
rated a PRO as important in round one was provided for each participant
group (i.e., for individuals with GID, caregivers, and experts). The reasons
provided by the participants in the first round for the perceived importance
or unimportance of each PRO were summarized and compiled into a
document, which was also shared with the participants via a link in the
instruction form. Participants were asked to reconsider their decision
on whether a PRO should always be discussed during consultation or
provided treatment for. Response options were once again ‘Yes’, ‘Unsure/I
do not know’, and ‘No’. In this round, participants were not asked to justify
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