Page 68 - Let them speak Towards a patient reported outcome measure set for

Chapter 3
50). In addition, the COnsensus-based Standards for the selection of health
Measurement INstruments (COSMIN) initiative usually use a consensus
threshold of 67% in Delphi studies (51, 52). However, given the considerable
diversity within and between GID subgroups, it is reasonable to anticipate
a wide range of relevant PROs. For this reason, the consensus threshold
will not be excessively high: the consensus threshold will be set at 60% or
more of all stakeholder groups responding ‘Yes’ for a PRO to include the
PRO in the final generic core PRO set. If 60% or more of all stakeholder
groups respond ‘No’ for a PRO, it will not be included in the final generic core
PRO set. The responses of round one will be analyzed for each participant
group. The PROs that have reached consensus for inclusion or exclusion
from the final generic core PRO set will be shown again in the second
round to allow participants to reassess them and ensure their inclusion
or exclusion. If at least two participants suggest the same modification to
the conceptualization of a PRO or suggest the same additional PRO in the
open-ended question, it will be included in the second round.
Round two
In the second survey round, PROs will be reprioritized with the aim to reach
consensus on which PROs should be included in the final generic core
PRO set. The pilot generic core PRO set, along with feedback from the first
round, will be presented to participants. The results for each PRO will be
aggregated for each participant group, and summary statistics and reason
for inclusion or exclusion will be presented. Response options will be the
same as in the first round. The responses of round two will be analyzed
again for each participant group. Responses will be carefully examined
to ensure no strong objections are raised against the prevailing group
response.
Step 3.2: Two consensus meetings
Two separate consensus meetings will be organized to reach consensus
on the undecided PROs: one online meeting with three Dutch individuals
with GID and three caregivers, and one online meeting with six experts.
At the end of Delphi round two, participants will be invited to join a
consensus meeting. Those who wish to participate will be checked on
socio-demographic characteristics to ensure diverse representation in the
66