Page 40 - Let them speak Towards a patient reported outcome measure set for

Chapter 2
Table 2. continued
Reported outcomes Frequency PRO ClinRO ObsRO PerfO
Number of
different outcome
measurement
instruments used
Sleep 26 12 19 0 7 0
Other / unclear 22 17 14 5 3 0
Motor function 20 19 3 7 2 8
Participation 18 11 13 0 5 0
Personalized goals 14 6 13 1 0 0
Emotion regulation 13 11 12 0 1 0
Activity 11 7 9 0 2 0
Syndrome-specific
10 8 5 5 0 0
symptoms
Academic skills 9 9 2 0 1 6
Attention 9 9 5 1 3 0
Repetitive behavior 9 2 8 1 0 0
Aggression 9 1 1 0 5 0
Anger 8 4 8 0 0 0
Hyperphagia 8 1 7 1 0 0
Pain 7 6 7 0 0 0
Irritability 7 1 7 0 0 0
Self-injurious behavior 6 5 5 1 0 0
Eating behavior 5 4 5 0 0 0
Epilepsy 5 2 5 0 0 0
Psychiatric symptoms 5 3 1 4 0 0
Self-efficacy 5 5 3 1 1 0
Self-esteem 5 1 5 0 0 0
Ataxia 4 3 0 4 0 0
Neurological function 4 1 0 4 0 0
Social support 4 3 4 0 0 0
Stress 4 4 4 0 0 0
Substance use 4 3 4 0 0 0
Concerns 3 3 1 2 0 0
Psychosocial function 3 2 3 0 0 0
Post-traumatic stress
3 2 3 0 0 0
disorder
Alertness 2 1 2 0 0 0
Coping behavior 2 2 2 0 0 0
Mentalizing abilities 2 2 0 0 0 2
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