Table 1 Outcomes, measures and to whom it is administered
Neurocognitive assessment | Measurement | T0 | T1 | T2 |
|---|---|---|---|---|
Attention | Attention Network task (ANT) [28] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Processing speed | Baseline Speed ANT [28] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Memory | Visual Sequencing task | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
|  | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) | |
Intellectual functioning | Abbreviated WISC-III* [29] | Patient/sibling (8–16) | - | Patient (8–16) |
|  | Abbreviated WAIS-III* [30] | Patient/sibling (17–18) | - | Patient (17–18) |
Inhibition | Stop Signal task [31] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Visuomotor integration | Tracking and Pursuit task | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Questionnaires | Â | Â | Â | Â |
Social/emotional functioning | SDQ child version [32] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
|  | SDQ parent version [32] | Caregiver (8–18) | Caregiver (8–18) | Caregiver (8–18) |
|  | SDQ teacher version [32] | Teacher (8–18) | Teacher (8–18) | Teacher (8–18) |
Self esteem | Dutch version SPPC [33] | Patient/sibling (8–11) | Patient (8–11) | Patient (8–11) |
|  | Dutch version SPPA [34] | Patient/sibling (12–18) | Patient (12–18) | Patient (12–18) |
Health related quality of life | Kidscreen 27 [35] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Fatigue | CIS [36] | Patient/sibling (8–18) | Patient (8–18) | Patient (8–18) |
Sleep disorder | SDSC [37] | Caregiver (8–18) | Caregiver (8–18) | Caregiver (8–18) |
Attention | SWAN [38] | Caregiver (8–18) | Caregiver (8–18) | Caregiver (8–18) |
Executive functioning | BRIEF parent version [39] | Caregiver (8–18) | Caregiver (8–18) | Caregiver (8–18) |
|  | BRIEF teacher version [39] | Teacher (8–18) | Teacher (8–18) | Teacher (8–18) |