Page 209 - Let them speak Towards a patient reported outcome measure set for

General discussion
through an international Delphi study and consensus meetings. This
process resulted in a concise yet comprehensive core PRO set for children
and adults with GID that again encompassed all health domains (Figure 2).
PRO domain PRO subdomain
Overarching 1. Quality of life
2. Perceived health
Functioning 3. Physical functioning/activities 4. Mobility/functioning of the lower
extremities
5. Social functioning/participation
6. Mental functioning 7. Depressive symptoms
8. Anxiety/stress
9. Anger/irritability
10. Sensory over-responsivity
11.  Cognitive functioning
Communication 11. Expressive communication
12. Receptive communication
Symptoms 14. Fatigue
15. Sleep
16. Pain
17. Hearing
18. Vision
19. Gastrointestinal symptoms
Figure 2. Core PRO set for GID.
PROs, patient reported outcomes.
Part 3: Selecting and psychometrically testing the core PROM set for GID
In Chapter 7, corresponding PROMs were selected to measure the core PRO
set, forming the core PROM set for children and adults with GID (Table 1).
The psychometric properties of the core PROM set (i.e., reliability, efficiency,
and construct validity) were assessed in a sample of caregivers of children
with GID, adults with GID, and caregivers of adults with GID. In general, the
set was found to be reliable and more efficient compared to commonly
used legacy questionnaires, such as the Child Behavior Checklist (CBCL)
and the Short Form-36 Health Survey (SF-36), for this population group.
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