Page 15 - Let them speak Towards a patient reported outcome measure set for

General introduction
Patient reported outcomes (PROs)
To better understand the impact of GID on daily life from a patient’s point of
view, we need to focus on patient reported outcomes (PROs). PROs capture
aspects of patients’ health, such as pain or fatigue, and are reported directly
by the patient or a proxy, such as a caregiver, without a clinician’s or another
person’s interpretation (19). PROs can be multidimensional, addressing
multiple health constructs (e.g., perceived health), or unidimensional,
focusing on a single health construct (e.g., pain). Identifying relevant PROs
for individuals with GID enables care, research, and policy to align more
effectively with their needs. For example, if sleep emerges as an important
PRO, care pathways can be adapted to address it more effectively, or
research can further explore sleep within GID and develop targeted
interventions.
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Patient reported outcome measures (PROMs)
PROs can be measured using patient reported outcome measures (PROMs),
which are standardized questionnaires completed by the patient (20). For
young children or individuals with cognitive impairments, a proxy, such as
a caregiver, can complete the PROM on their behalf. PROs and PROMs are
forms of clinical outcome assessments, which capture patients’ symptoms
and functioning. Clinical outcome assessments also encompass clinician
reported outcome measures, observer reported outcome measures, and
performance outcome measures (21). But this thesis focuses specifically
on PROs and PROMs (Figure 2).
PROMs can be generic, condition-specific, or individualized. Generic PROMs
(e.g., Child Health Questionnaire (22)) assess health constructs applicable
across various conditions or the general population. Condition-specific
PROMs (e.g., TSC-PROM (23)) focus on constructs relevant to a particular
condition, while individualized PROMs (e.g., Patient-Specific Complaint
Questionnaire (24)) target constructs relevant to a specific individual
(25). PROMs can measure multidimensional PROs (e.g., quality of life) or
unidimensional PROs (e.g., anxiety).
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