Page 145 - Let them speak Towards a patient reported outcome measure set for

Establishing the core PRO set
on importance/highest consensus on unimportance). For each PRO, the
conceptualisation and the percentage of participants rating it as important
in Delphi round two were shown for each participant group. Example PROM
items were provided to help participants better understand the meaning
and questions related to each PRO. PROs were discussed one by one
among participants. Then, participants were asked to decide whether the
PRO must always be discussed during consultation or provided treatment
for. Participants could anonymously make their decision via an online rating
tool (Wooclap). Response options were ‘Yes’ or ‘No’. If at least 60% of all
participants responded ‘Yes’ for a PRO in both consensus meetings, it was
included in the final generic core PRO set. If not, the PRO was excluded.
Results
Expert group meeting
Three members of the research team (NvS, MvM, AvE), one GID expert (LM),
and two PROM/COS experts (HvO, CT) participated in the expert group
meeting. Several outcomes were eliminated as they constituted no PROs
(e.g., ‘dental problems’ and ‘epilepsy’). The conceptualisation of several
PROs was adapted (e.g., in the conceptualisation of ‘relationships’, ‘love
relationships’ was adapted to ‘love relationships at an older age’, as young
children typically do not have romantic relationships) or supplemented
(e.g., ‘feeling under-stimulated or bored due to little stimulation from
the environment’ was added to the conceptualisation of ‘sensory under-
responsivity’). After discussing all PROs, 29 unique PROs remained; the
pilot generic core PRO set (Data S1).
International Delphi study
Participants
In round one, there were 61 participants, including 12 individuals with GID,
21 caregivers, and 28 experts. In round two, there were 46 participants,
including 10 individuals with GID, 14 caregivers, and 22 experts. Only
participants who responded in round one were invited for round two. Table
1 shows the characteristics of the participants per round.
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