Qualitative measures that assess functional disability and quality of life in ALS

Table 2 Summary comparison of measurement properties among ALSFRS-R and more recent qualitative measurement scales for functioning

	ALSFRS-R	ALSFRS-EX	ALS-MITOS^a	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

ISSN: 1477-7525