Page 158 - Let them speak Towards a patient reported outcome measure set for

Chapter 6
GID population. However, some PROs may still lack an existing available
PROM, necessitating further studies to develop an appropriate PROM for
this specific PRO. Once the PROMs are selected and the core PROM set
is established, validation in the GID population is essential, for example,
by assessing reliability, known-groups validity, and responsiveness of
the PROMs for both self- and proxy-reports. Ultimately, the core PROM
set should be implemented into GID care and research. Implementation
researchers will carry out this process, considering potential barriers such
as clinicians not discussing PROM results with the patient and/or caregiver
during a consultation (Teela et al. 2021; van Muilekom et al. 2022).
The core PRO(M) set could contribute to a future COS that includes all
relevant outcomes for GID. During the COS development, it is crucial to
re-evaluate how each PRO is best measured; with a PROM or a different
instrument. For example, while hearing can be assessed using a PROM,
a hearing test might be more appropriate, allowing for future replacement
of the PROM with a more suitable instrument. Additionally, the PROs and
other outcomes excluded from this study, such as impact on the family,
should be evaluated as well, as they may be crucial for inclusion in the full
COS for GID.
Conclusions
This study represents the final step in establishing a generic core PRO set for
individuals with GID. Following two scoping reviews and focus groups and
interviews with individuals with GID, caregivers, and healthcare professionals
(van Silfhout, van Muilekom, van Karnebeek, Daams, et al. 2025; van
Silfhout, van Muilekom, van Karnebeek, Haverman, and van Eeghen 2025),
key PROs were identified. These outcomes formed the basis for this Delphi
study and subsequent consensus meetings, in which 19 core PROs were
selected. Together, this GID core PRO set provides a framework to guide
clinical care, research, and health policy for GID, ensuring better alignment
with the needs and priorities of affected individuals, as well as caregivers
and healthcare professionals. The next step is to select appropriate PROMs
to effectively measure these PROs, forming the core PROM set. Ultimately,
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