Page 155 - Let them speak Towards a patient reported outcome measure set for

Establishing the core PRO set
Integrating the core PRO set with other evidence
Mental functioning was broadly represented in the core PRO set, including
overall mental functioning, depressive symptoms, anxiety/stress, anger/
irritability, and sensory over-responsivity. This aligns with our earlier
qualitative study, where mental functioning was frequently highlighted
by affected individuals, caregivers, and experts as an important topic to
discuss during consultation (van Silfhout, van Muilekom, van Karnebeek,
Haverman, and van Eeghen 2025). Implementing the core PRO set in care
and research will likely enhance focus on mental functioning, potentially
leading to more suitable mental healthcare for individuals with GID. Currently,
mental healthcare is often inadequate due to fragmented services and a
lack of tailored treatment for this population, leading to undiagnosed and
untreated mental health issues (Pouls et al. 2023; Schützwohl et al. 2016).
Various symptoms were also broadly represented in the core PRO set.
While symptoms like sleep issues, pain, and gastrointestinal problems in
individuals with GID are well-researched (Agar et al. 2021; de Knegt et al.
2017; Robertson et al. 2018), fatigue remains underexplored in research
studies. This might also suggest a gap in GID care. Previous studies in
other health conditions, such as heart failure and autoimmune disease,
demonstrated that fatigue can significantly affect daily life, impacting
physical and mental health, as well as the ability to perform daily tasks and
engage in social activities (Elefante et al. 2020; Schjoedt et al.; 2016). This
underscores the need to address and understand fatigue in GID care and
research, a focus that may be addressed through the implementation of the
core PRO set.
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An interesting finding was that the core PRO set showed a complete overlap
with the Dutch standard set of generic PROs which is currently implemented
in medical care (Oude Voshaar et al. 2023). While our core PRO set is more
comprehensive, including specific PROs like gastrointestinal symptoms,
key general PROs such as fatigue, depressive symptoms, and pain, are all
part of the generic Dutch set as well. This finding reinforces the evidence
that most PROs, such as fatigue and depressive symptoms, are relevant
across various conditions and age groups, including those with GID (Katon
and Ciechanowski, 2002; Swain, 2000).
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