Page 224 - Let them speak Towards a patient reported outcome measure set for

Chapter 8
less observable constructs such as mental functioning (54-56). Therefore,
adapting the PROM set for individuals with, for example, mild to moderate
ID may be essential. This could include using easy-read language and clear
pictures/pictograms (57, 58). In addition, involving individuals with ID in
adapting the PROM set is essential.
It is also important to consider whether people with low health literacy,
including those with ID, must be supported during PROM completion.
Many may still need help completing the questions, even after the PROM
set has been adapted. For example, those who cannot read or who still
need additional explanation of the questions and response options, as well
as those with limited computer skills who find it difficult to access their
electronic patient record (EPR) and independently complete PROMs online.
However, assistance during questionnaire completion may introduce bias.
Individuals may be inclined to give more favorable responses if someone
is observing them, particularly if they have a personal relationship with
the person providing assistance (59). It is therefore important to consider
whether assistance is truly necessary and, if so, to match the support to the
preferences of the individual.
Implementing the core PROM set in care and research
Once the core PROM set is sufficiently psychometrically evaluated in
the GID population, it should be implemented in both care and research,
in collaboration with experienced implementation researchers from the
Amsterdam UMC PROM Expertise Center and the KLIK PROM portal.
Besides measuring PROMs within an EPR, PROMs can also be administered
via an external PROM portal, such as the evidence-based KLIK PROM
portal (www.hetklikt.nu). The KLIK PROM portal is an accessible platform
for implementing the core PROM set in clinical care and is already used
in several hospitals in the Netherlands to monitor and discuss PROM
results with patients across a range of conditions (60). KLIK effectively
enables systematic PRO monitoring and discussion in clinical care (61, 62).
However, barriers to implementation must be anticipated. Prior research
indicated that healthcare professionals often fail to discuss PROM results
with patients and caregivers due to time constraints, technical issues, or
uncertainty about how to interpret, discuss, and integrate PROM results
into their workflow (63, 64). Ongoing support and regular evaluation of
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