Table 3.
Responsiveness of PROMs of based on clinical utility among parents of children affected by ND
| Genomic testing useful in changing management | Genomic testing useful in improving health | ||||||||||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Yes | No | Yes | No | ||||||||||||||||||||
| Changes in HRQoL | N | Mean | SD | p-value | SRM | N | Mean | SD | p-value | SRM | N | Mean | SD | p-value | SRM | N | Mean | SD | p-value | SRM | |||
| ND parents | |||||||||||||||||||||||
| SF-6D | 13 | -0.04 | 0.07 | 0.14 | -0.499a | 9 | -0.02 | 0.13 | 0.72 | -0.12 | 13 | -0.02 | 0.05 | 0.28 | -0.31a | 9 | -0.05 | 0.15 | 0.38 | -0.31a | |||
| SF-12 PCS | 13 | -1.64 | 11.96 | 0.63 | -0.14 | 9 | -3.49 | 6.89 | 0.17 | -0.50b | 13 | -1.57 | 11.68 | 0.64 | -0.13 | 9 | -3.59 | 7.55 | 0.19 | -0.48a | |||
| SF-12 MCS | 13 | -0.19 | 15.41 | 0.97 | -0.01 | 9 | 1.25 | 12.30 | 0.77 | 0.10 | 13 | 1.34 | 14.84 | 0.75 | 0.09 | 9 | -0.95 | 13.24 | 0.84 | -0.07 | |||
Note: PROMs: patient-reported outcome measures; ND: neurodevelopmental disorders.
The values of 0.2, 0.5 and 0.8 represent the cut-off points for small (a), moderate (b), and large (c) standardised response mean (SRM) effect sizes