Page 152 - Let them speak Towards a patient reported outcome measure set for

Chapter 6
Final core PRO set
The final generic core PRO set included 19 PROs; 12 agreed upon during the
Delphi study and seven during the consensus meetings. The classification
and conceptualisation of the PROs are presented in Table 4.
Discussion
The aim of this study was to identify the most relevant PROs from the
perspectives of affected individuals, caregivers, and experts through an
international Delphi study and consensus meetings. It marks the final step in
developing a generic core PRO set for GID, intended for use in both care and
research, as previously outlined in our protocol (van Silfhout et al. 2024). In
the first Delphi round, consensus was reached on only one important PRO:
fatigue. In the second round, consensus was reached on 12 important PROs:
fatigue, sleep, physical functioning/activities, quality of life, social functioning/
participation, perceived health, cognitive functioning, depressive symptoms,
mobility/functioning of the lower extremities, receptive communication,
expressive communication, and sensory over-responsivity. One PRO was
eliminated, and the 16 PROs on which consensus had not yet been reached
during the Delphi rounds were discussed during the consensus meetings.
Consensus was reached on seven additional important PROs: pain, hearing,
anxiety/stress, gastrointestinal symptoms, anger/irritability, vision, and mental
functioning. The final generic core PRO set included 19 PROs related to all life
domains, underscoring the need for a holistic approach in GID care and research.
Affected individuals and caregivers were more selective in their ratings than
experts, leading to consensus on only one PRO in round one. Almost all
PROs were, however, reported by individuals and caregivers in our qualitative
study and no additional PROs were suggested by more than one individual
or caregiver (van Silfhout, van Muilekom, van Karnebeek, Haverman, and
van Eeghen 2025). We therefore consider it likely that this selectivity reflects
that individuals and caregivers focused on their own or their child’s situation,
whereas experts considered the broader heterogeneous GID population.
Moreover, as the consensus threshold required ≥ 60% agreement across all
participant groups, individuals with GID and caregivers had the casting vote
in the final core PRO set.
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