Page 140 - Let them speak Towards a patient reported outcome measure set for

Chapter 6
Providing an overview of potentially relevant PROs
Following the steps outlined in our protocol (van Silfhout et al. 2024),
PROs, including their conceptualisation (i.e., content of each PRO), were
identified by scoping reviews and through focus groups and interviews with
affected individuals, caregivers, and clinical experts (i.e., Dutch healthcare
professionals, such as psychologists and ID physicians, and European
patient representatives) (van Silfhout, van Muilekom, van Karnebeek, Daams,
et al. 2025; van Silfhout, van Muilekom,van Karnebeek, Haverman, and van
Eeghen 2025). PROs were integrated by two members of the research
team (NvS, MvM), and classified and conceptualised within a conceptual
framework. This conceptual framework was described and illustrated in
our protocol (van Silfhout et al. 2024) and is based on the model of Valderas
and Alonso (Valderas and Alonso, 2008) (combination of the classification
model by Wilson and Cleary (1995) and the International Classification of
Functioning, Disability and Health (ICF) (Ustun et al. 2003)), and the Patient-
Reported Outcomes Measurement Information System (PROMIS) (Cella et
al. 2007). The decision to combine the Valderas and Alonso model, which
focuses on PROs, with the PROMIS framework, which focuses on PROMs,
was made by experts in the field of PROs, PROMs, and PROM development,
together with representatives of umbrella organisations, including medical
specialists, psychologists, patients, and researchers (Oude Voshaar et al.
2023). In this framework, a PRO domain represents a broad PRO category
(e.g., mental functioning), while a PRO subdomain represents a specific PRO
within a PRO domain (e.g., depressive symptoms). The conceptualisation
of each PRO was further supplemented using information from existing
literature regarding GID and clinical guidelines for GID. In cases where
there was no information about the conceptualisation of a PRO for GID, the
general conceptualisation for a PRO used by PROMIS was applied.
Expert group meeting
An expert group meeting was performed with the members of the research
team (NvS, PhD candidate and psychologist; AvE, ID physician; and MvM,
PROM expert and psychologist) and PROM/COS/GID experts from the
Amsterdam UMC to discuss the potentially relevant PROs for GID. The
research team invited these experts due to their comprehensive knowledge
on PROMs, COS, or GID. The classification and conceptualisation of
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