Page 225 - Let them speak Towards a patient reported outcome measure set for

General discussion
implementation efforts are therefore essential. Attention should be given
to variations in organizational workflows across different departments or
care organizations. Engagement with healthcare professionals is essential
to ensure that the core PROM set is integrated into existing workflows in a
manner that is both feasible and appropriate for them and the populations
they serve.
Targeted training is also needed to help healthcare professionals
communicate PROM results in an accessible and meaningful way to
individuals with ID. Furthermore, patients may lose motivation to complete
PROMs if results are not addressed during consultations (65). It is therefore
critical to emphasize to healthcare professionals the importance of
discussing the PROM results with affected individuals and their caregivers.
Moreover, clear communication of the PROMs’ purpose to individuals,
caregivers, and healthcare professionals can further enhance engagement
and meaningful use (66). Implementation frameworks, specifically
determinant frameworks such as the Consolidated Framework for
Implementation Research (CFIR), can support the identification of barriers
and facilitators during the implementation process (67).
When implementing the core PROM set in care and research, it should be
recognized that other potentially relevant outcomes, such as epilepsy or
social support, are not captured within this set because they did not meet the
definition of a PRO. This may result in reduced attention to these outcomes.
This limitation further underscores the need to develop a comprehensive
CO(M)S for GID, to ensure that other relevant outcomes are not overlooked
in care and research.
8
A core PROM set for caregivers and siblings
Although this thesis focused on developing a core PRO(M) set for individuals
with GID, the needs of their caregivers must not be overlooked. Caring for
someone with GID can significantly affect caregivers’ daily lives. Previous
research showed that caregivers may experience loss of self-identity,
autonomy, and employment due to the demands of full-time caregiving
(68). They also report higher levels of depression, anxiety, disrupted sleep,
fatigue, and social isolation (69-72). Our qualitative findings further highlight
that caregivers often feel neglected by healthcare professionals, as the
223