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Table 2. continued
Round 1 Round 2
PRO Individuals
with GID
21. Functioning of the upper extremities 50% 52% 75% ≥ 50% 80% 43% 59% ≥ 43%
22. Participation/joining 42% 52% 86% ≥ 42% 40% 57% 73% ≥ 40%
23. Relationships 25% 48% 92% ≥ 25% 40% 50% 59% ≥ 40%
24. Chewing and swallowing 25% 43% 64% ≥ 25% 40% 50% 59% ≥ 40%
25. Sensory under-responsivity 25% 48% 61% ≥ 25% 30% 43% 59% ≥ 30%
26. Sexual functioning 25% 33% 79% ≥ 25% 30% 43% 50% ≥ 30%
27. Hearing 25% 24% 71% ≥ 24% 70% 28% 82% ≥ 28%
28. Itch 42% 24% 21% ≥ 21% 40% 36% 27% ≥ 27%
29. Mental functioning 42% 52% 79% ≥ 42% 20% 79% 91% ≥ 20%
Caregivers Experts Consensus Individuals
with GID
Caregivers Experts Consensus
PRO, patient reported outcome; GID, genetic intellectual disabilities.
Light blue indicates consensus within a participant group; dark blue indicates consensus across all three participant groups.
PROs are ranked from highest to lowest consensus on importance in Delphi round two.
Chapter 6
