Page 149 - Let them speak Towards a patient reported outcome measure set for

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Table 2. PROs considered important in Delphi round one and two.
Round 1 Round 2
PRO Individuals
with GID
Caregivers Experts Consensus Individuals
with GID
Caregivers Experts Consensus
1. Fatigue 75% 67% 86% ≥ 67% 80% 100% 100% ≥ 80%
2. Sleep 92% 57% 100% ≥ 57% 100% 79% 100% ≥ 79%
3. Physical functioning/activities 50% 71% 96% ≥ 50% 100% 79% 77% ≥ 77%
4. Quality of life 58% 57% 89% ≥ 57% 80% 71% 77% ≥ 71%
5. Social functioning/participation 42% 52% 96% ≥ 42% 70% 79% 82% ≥ 70%
6. Perceived health 92% 52% 75% ≥ 52% 100% 65% 73% ≥ 65%
7. Cognitive functioning 50% 62% 96% ≥ 50% 70% 65% 91% ≥ 65%
8. Depressive symptoms 50% 24% 75% ≥ 24% 70% 64% 86% ≥ 64%
9. Mobility/functioning of the lower extremities 58% 57% 82% ≥ 57% 100% 65% 64% ≥ 64%
10. Receptive communication 50% 62% 82% ≥ 50% 60% 72% 77% ≥ 60%
11. Sensory over-responsivity 50% 86% 75% ≥ 50% 60% 100% 68% ≥ 60%
12. Expressive communication 33% 76% 89% ≥ 33% 60% 64% 68% ≥ 60%
13. Pain 58% 52% 64% ≥ 52% 90% 57% 86% ≥ 57%
14. Anxiety/stress 58% 81% 93% ≥ 58% 80% 57% 100% ≥ 57%
15. Anger/irritability 42% 71% 93% ≥ 42% 50% 93% 86% ≥ 50%
16. Self-care 33% 76% 93% ≥ 33% 50% 86% 91% ≥ 50%
17. Vision 33% 33% 79% ≥ 33% 70% 50% 82% ≥ 50%
18. Gastrointestinal symptoms 50% 53% 89% ≥ 50% 70% 50% 77% ≥ 50%
19. Respiratory symptoms 25% 38% 71% ≥ 25% 70% 50% 64% ≥ 50%
20. Pain interference 75% 38% 64% ≥ 38% 90% 43% 68% ≥ 43%
Establishing the core PRO set
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