Page 183 - Let them speak Towards a patient reported outcome measure set for

Evaluating the core PROM set
children showed insufficient reliability (α = 0.36 – 0.67). Legacy subscales
for adults showed sufficient reliability (α > 0.70; 2 – 18 items), except SF-
36 Energy/Fatigue (α = 0.68). Legacy subscales for caregivers of adults
showed sufficient reliability (α > 0.70; 2 – 17 items), except SF-36 Energy/
Fatigue (α = 0.67) and SF-36 Social Functioning (α = 0.62).
Table 2. Participant characteristics.
Caregivers of
children (n = 40)
Adults (n = 37) Mean (range) Mean (range) Mean (range)
Caregivers of adults
(n = 44)
Age1 11.4 (5-17) 38.1 (20-60) 31.7 (18-62)
N N N
Gender (female)1,2 20 255 20
Genetic diagnosis1 31 29 31
Intellectual functioning1,4
Normal 1 12 1
Borderline 3 5 2
Mild ID4 8 11 9
Moderate ID4 13 9 13
Severe ID4 10 0 14
Profound ID4 1 0 4
Unknown 4 0 1
7
ID, intellectual disabilities; GenID, (genetic) intellectual disabilities.
1Of the individual with GenID, not the caregiver.
2None of the individuals with GenID identified as a gender other than male or female.
3As reported by the affected individual or caregivers.
4Based on the classification of the Diagnostic and Statistical Manual of Mental Disorders, Fifth
Edition (DSM-5) (64).
5For three participants, information on gender was missing.
No floor and ceiling effects were observed for PROMIS CATs and SFs.
Several legacy subscales for caregivers of adults showed floor and ceiling
effects: floor effects were observed in ABCL Anxious/Depressed (28.6%)
and ABCL Withdrawn (19.0%); ceiling effects in SF-36 Role Limitations
Due to Physical Health Problems (28.6%), SF-36 Role Limitations Due to
Emotional Problems (35.7%), and SF-36 Social Functioning (21.4%).
Most PROMIS CATs and SFs demonstrated sufficient test–retest reliability
over two weeks (ICC ≥ 0.70), except PROMIS Fatigue for caregivers of
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