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Table 1. GenID core PROM set.
PRO domain PRO subdomain Children Adults
Mobility/functioning of the lower
extremities
NRS Well-being (24) NRS Health (24) PROMIS CAT – Mobility (33) Quality of life Experienced
health
Physical
functioning/
activities
Social
functioning/
participation
Mental
functioning
Proxy-report Self-report Proxy-report
PROMIS Scale - Global Health (1
PROMIS Scale - Global Health (1
item) (32)
item) (32)
PROMIS Scale - Global Health (1
PROMIS Scale - Global Health (1
item) (32)
item) (32)
PROMIS CAT - Physical Function
PROMIS CAT - Physical Function
(34)
(34)
PROMIS CAT - Relationships
with Peers (33)
PROMIS CAT - Ability to
PROMIS CAT - Ability to
Participate in Social Roles and
Participate in Social Roles and
Activities (35)
Activities (35)
PROMIS Scale - Global Health (1
PROMIS Scale - Global Health (1
PROMIS Scale - Global Health (1
item) (36)
item) (32)
item) (32)
Depressive symptoms PROMIS CAT - Depressive
PROMIS CAT - Depression (37,
PROMIS CAT - Depression (37,
Symptoms (33)
38)
38)
Anxiety/stress Anger/irritability PROMIS CAT – Anxiety (33) PROMIS CAT - Anxiety (37, 38) PROMIS CAT - Anxiety (37, 38)
PROMIS SF – Anger (33) PROMIS SF – Anger (37) PROMIS SF – Anger (37)
Sensory over-responsivity No suitable PROM No suitable PROM No suitable PROM
Cognitive
functioning
PROMIS SF - Cognitive Function
PROMIS SF - Cognitive
PROMIS SF - Cognitive
(39)
Functioning – Abilities (40)
Functioning – Abilities (40)
Communication Expressive communication No suitable PROM No suitable PROM No suitable PROM
Receptive communication No suitable PROM No suitable PROM No suitable PROM
Fatigue NRS Fatigue / PROMIS CAT -
NRS Fatigue / PROMIS CAT -
NRS Fatigue / PROMIS CAT –
Fatigue* (24, 33)
Fatigue* (25, 41)
Fatigue* (25, 41)
Sleep NRS Sleep / PROMIS CAT- Sleep
PROMIS CAT - Sleep
PROMIS CAT - Sleep
Disturbance* (24, 42)
Disturbance (43)
Disturbance (43)
Pain NRS Pain (24) NRS Pain (25) NRS Pain (25)
Chapter 7