Table 2.
ALSFRS-R | ALSFRS-EX | ALS-MITOSa | CNS-BFS | DALS-15 | MND-DS | ROADS | |
---|---|---|---|---|---|---|---|
Conceptual model | |||||||
Construct defined | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Target population defined | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Expected subscales described | ✓ | ✓ | ✓ | n/a | n/a | n/a | n/a |
Content validity | |||||||
Patient Input | X | ✓ | a | ✓ | ✓ | ✓ | ✓ |
Expert Input | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Description of item development (Item generation /reduction) | X | ✓ | a | ✓ | ✓ | ✓ | ✓ |
Reliability | |||||||
Test retest | ✓ | ✓ | a | ✓ | ✓ | ✓ | ✓ |
Internal consistency | ✓ | ✓ | a | ✓ | ✓ | ✓ | ✓ |
Construct validity | |||||||
Convergent | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Longitudinal | ✓ | ✓ | ✓ | ✓ | In progress | TBD | In progress |
Responsiveness | |||||||
Across disease subgroups | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Functional status | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Therapy/treatment | ✓ | TBD | TBD | ✓ | In progress | TBD | In progress |
Interpretation and scoring | |||||||
Plan for scoring measure | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Scaling described | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Ease of use/patient burden | |||||||
Easy to administer | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Length reasonable—minimal patient burden | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
TBD to be determined
aStaging system developed as a novel way to interpret the scoring of the already validated ALSFRS-R domains. No item generation or reduction required. As such, no patient input sought. No additional clinical expert input sought