Page 151 - Let them speak Towards a patient reported outcome measure set for

Establishing the core PRO set
Consensus meetings
The remaining 16 PROs were discussed during the two online consensus
meetings. In total, three individuals with GID and three caregivers participated
in one consensus meeting, and six experts in the other consensus meeting.
One individual with GID and all experts had also participated in the Delphi
study. Characteristics of the participants are described in Data S2.
Table 3 shows the percentage of participants in each consensus meeting
rating a PRO as important (light green for ≥ 60%) and the final consensus
reached across consensus meetings (dark green for ≥ 60%). Consensus
was reached on seven additional PROs considered important: pain, hearing,
anxiety/stress, gastrointestinal symptoms, anger/irritability, vision, and
mental functioning.
Table 3. PROs considered important in the consensus meetings.
Consensus meetings
PRO 1. Pain 100% 100% 100%
2. Hearing 100% 100% 100%
3. Anxiety/stress 83% 100% 83%
4. Gastrointestinal symptoms 83% 100% 83%
5. Anger/irritability 100% 67% 67%
6. Vision 67% 83% 67%
7. Mental functioning 67% 83% 67%
8. Respiratory symptoms 100% 50% 50%
9. Self-care 50% 50% 50%
10. Sensory under-responsivity 67% 33% 33%
11. Sexual functioning 33% 33% 33%
12. Relationships 17% 50% 17%
13. Pain interference 100% 0% 0%
14. Chewing and swallowing 67% 0% 0%
15. Itch 50% 0% 0%
16. Functioning of the upper extremities 33% 0% 0%
Individuals with
GID and caregivers
Experts Consensus
PRO, patient reported outcome; GID, genetic intellectual disabilities.
Light blue indicates consensus within one consensus meeting; dark blue indicates consensus
across both consensus meetings.
PROs are ranked from highest to lowest consensus on importance.
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