Page 221 - Let them speak Towards a patient reported outcome measure set for

General discussion
patients and caregivers were more selective in their PRO rating than the
international professionals, thereby having greater influence on the final
core PRO set. In addition, only Dutch individuals were included in the
psychometric study because the questionnaires were distributed in Dutch.
As a result, the core PROM set has not yet been psychometrically tested
in non-Dutch or multi-ethnic populations. PROMIS measures are available
in multiple languages, including English, Spanish, French, and Arabic (43),
which enables international psychometric testing. However, use of the core
PRO(M) set outside the Netherlands and across diverse ethnic groups
should be undertaken with caution, and further validation of the set in other
countries and among people with multiple ethnic backgrounds is required.
Patients and caregivers as co-researchers
Patients and caregivers can be involved in different participatory roles during
research projects: as listener (i.e., is given information), co-thinker (i.e., is
asked to give opinion), advisor (i.e., gives (un)solicited advice), partner (i.e.,
works as an equal partner), and decision-maker (i.e., takes initiative, (final)
decision) (44). Increasing emphasis is placed on involving people with ID
as co-researchers (45). For our Delphi study, we involved one individual
with GID and one caregiver as an advisor; they pilot-tested the Delphi
survey and recommended adaptations to improve its usability. However,
affected individuals and caregivers could have been more extensively
involved across the studies to better incorporate their perspectives into the
research. Involving them in the design of the focus groups and interviews,
Delphi study, and psychometric study may have improved the suitability of
the research for affected individuals and caregivers, particularly for those
with ID. They could also have contributed to dissemination efforts, for
example by co-presenting or co-writing findings, to help ensure the results
were communicated in accessible language for the target audience.
Directions for future research and implementation
To ultimately implement the core PRO(M) set in clinical care and research,
its suitability for individuals with GID needs to and will be further evaluated.
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