Page 192 - Let them speak Towards a patient reported outcome measure set for

Chapter 7
and Activities (mean T-score 45.1 vs 48.5), which exceeded the minimal
important difference of 3 points. Adults with ID scored slightly higher on
PROMIS Anger (mean T-score 57.2 vs 55.1) and PROMIS Sleep Disturbance
(mean T-score 56.1 vs 54.3), but without exceeding the minimal important
difference of 3 points.
GenID outcomes
Table 10 shows the mean PROMIS T-scores for the GenID population.
According to caregivers, children showed a severe deviation from the
reference data on PROMIS Mobility, moderate deviations on PROMIS
Peer Relationships, Anxiety, Anger, Cognitive Function, Fatigue, and Sleep
Disturbances, and a mild deviation on PROMIS Depressive Symptoms.
Adults showed mild deviations from the reference data on PROMIS Physical
Function, Anxiety, Anger, Fatigue, and Sleep Disturbances.
Table 10. Mean PROMIS T-scores for the GenID population.
PROMIS questionnaire Caregivers of children Adults Caregivers of
adults
N Mean T-score 35.5 35.3 55.3 N Mean
N Mean
T-score
T-score
PROMIS Mobility1,3 40 x x x x
PROMIS Physical Function1,3 40 x 37 44.9 43 41.9
PROMIS Peer Relationships1,3 40 37 x 42 x
PROMIS Social Roles and
40 x 37 46.7 42 41.2
Activities1,3
PROMIS Anxiety2,3 40 55.0 37 58.7 42 59.9
PROMIS Depressive Symptoms2,3 40 x x x x
PROMIS Depression2,3 x x 37 54.8 42 54.08
PROMIS Anger2,4 39 58.7 37 56.2 41 55.2
PROMIS Cognitive Function1,4 39 39.1 x x x x
PROMIS Cognitive Functioning –
x x 37 45.2 41 44.8
Abilities1,4
PROMIS Fatigue2,3 40 58.9 36 57.6 42 53.9
PROMIS Sleep Disturbance2,3 40 61.6 36 55.2 42 52.4
PROMIS, Patient-Reported Outcomes Measurement Information System.
reference data for Dutch adults (41, 43, 62, 63), American adults (65), and American parents (60, 65).
1Higher scores indicate more of the construct being measured; i.e., better functioning.
2Higher scores indicate more of the construct being measured; i.e., worse functioning.
3PROMIS Computerized Adaptive Test.
4PROMIS Short Form.
Score = mild deviation; score = moderate deviation; score = severe deviation based on current
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