Page 125 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
Although these themes did not meet the criteria for PROs, this does not
diminish their importance. These outcomes should be considered in the
development of a full core outcome set. This core outcome set should
include all outcomes relevant to individuals with (G)ID, not only PROs.
Interestingly, participants emphasized specific themes with a negative
impact on daily life, while aspects with a positive impact were not considered
important to discuss with a HCP. Although (G)ID care often focusses on
the strengths and abilities of affected individuals, this finding suggest
that discussing aspects with a positive impact during consultations may
not be as essential. Additionally, there is insufficient research indicating
that patients want to discuss positive health aspects, and measuring this
preference in care and research remains difficult (62).
The significance of relevant PROs – towards a meaningful PRO set
Identifying relevant PROs for (G)ID is one of the important first steps towards
developing a meaningful PRO set, which can influence care, research, and
policymaking to better address the needs of affected individuals. These
PROs can guide the development of clinical guidelines and care pathways
in- and outside of hospitals, promoting patient-centred care. They also
help identify research priorities and treatment targets to ensure relevance
to individuals with (G)ID. Additionally, these PROs can inform policy
development, ensuring that healthcare policies are tailored to the specific
needs of this population.
Strengths and limitations
A strength of this study is its broad sample, incorporating perspectives of
affected individuals, caregivers, HCPs, and European patient representatives.
Identifying shared PROs and other themes across different conditions
enables grouping of these conditions, resulting in more efficient care
and research. Another innovative and crucial aspect of the current study
is that identified themes were assessed on whether it constituted PROs
or other outcomes. PROs were classified and conceptualized into a novel
framework, which led to a well-defined set of relevant PROs for the complex
patient population with (G)ID, serving as a systematic and solid foundation
for future studies.
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