Page 146 - Let them speak Towards a patient reported outcome measure set for
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Chapter 6
Table 1. Characteristics Delphi study participants.
Round 1 Round 2
Number of participants 61 46
Individuals with GID (frequency) 12 10
Age Mean (range) Mean (range)
31.4 (14 – 55) 28.3 (14-46)
Frequency Frequency
Caregivers (frequency) 21 14
Age child Gender (female)* 7 6
Diagnosis unknown 3 2
Diagnosis (GID)1
16p11.2 deletion syndrome 2 2
Fragile X syndrome 1 1
Tuberous sclerosis complex 1 1
22.q11.2 deletion syndrome 1 1
Chung-Jansen syndrome 1 1
Joubert syndrome 1 1
Primrose syndrome 1 1
Other2 1 0
Intellectual functioning1
Normal 2 2
Borderline 1 1
Mild ID3 8 6
Moderate ID3 1 1
Mean (range) Mean (range)
16.3 (5 – 38) 14.8 (5 – 38)
Frequency Frequency
Gender child (male)* 14 8
Diagnosis unknown 4 3
Diagnosis (GID) 1
DeSanto-Shinawi syndrome 1 1
FOXP1 syndrome 1 1
15q13.3 microdeletion syndrome 1 1
Snijders Blok-Campeau syndrome 1 1
Ehlers‐Danlos syndrome 1 1
SPTAN1-syndrome 1 1
Coffin-Siris syndrome 1 1
Wiedemann-Steiner syndrome 1 1
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