Table 2.

Assessments utilised and non-motor symptoms evaluated

Tool	Intended area of focus	Non-motor symptom assessed	Separate score for non-motor symptom?	ALS specific	Symptom specific	ALS and symptom specific	Frequency of use as an outcome measurea
C-SSRS (Columbia Suicide Severity Rating Scale)	Suicidality	Neuropsychiatric	Yes	No	Yes	No	4
NPI-Q (Neuropsychiatric Inventory Questionnaire)	Neuropsychiatric	Neuropsychiatric	Yes	No	Yes	No	1
ESS (Edmonton Symptom Assessment Scale)	Quality of life	Neuropsychiatric	No	No	No	No	1
		Pain	No	No	No	No	1
		Sleep	No	No	No	No	1
HADS (Hospital Anxiety and Depression Scale)	Anxiety and depression	Neuropsychiatric	Yes	No	Yes	No	2
ADI-12 (Amyotrophic Lateral Sclerosis Depression Inventory-12 item)	Depression	Neuropsychiatric	Yes	No	No	Yes	1
HAM-D (Hamilton-Depression)	Depression	Neuropsychiatric	Yes	No	Yes	No	3
ALSSQOL-R (Amyotrophic Lateral Sclerosis Specific Quality of Life—Revised and Short Form)	Quality of life	Pain	No	Yes	No	No	33
		Fatigue	No	Yes	No	No	33
		Neuropsychiatric	No	Yes	No	No	33
		Sleep	No	Yes	No	No	33
		Cognitionb	No	Yes	No	No	33
SF-8, SF-12 and SF-36 (Short Form Health Survey—8 item, 12 item or 36 item)	Quality of life	Pain	No	No	No	No	31
		Neuropsychiatric	No	No	No	No	31
SEI-QoL (Schedule for Individual Quality of Life)	Quality of life	Self-reported (any)	No	No	No	No	1
ALSAQ-5 (Amyotrophic Lateral Sclerosis Assessment Questionnaire—5 item)	Quality of life	Neuropsychiatric	No	Yes	No	No	6
ALSAQ-40 (Amyotrophic Lateral Sclerosis Assessment Questionnaire—40 item)	Quality of life	Pain	No	Yes	No	No	34
		Neuropsychiatric	No	Yes	No	No	34
EQ-5D-5L and EQ-5D-3L (Europol—5 Dimension—5 and 3 Level)	Quality of life	Pain	No	No	No	No	13
		Neuropsychiatric	No	No	No	No	13
McGill or McGill Revised	Quality of life	Neuropsychiatric	No	No	No	No	9
KFSS (Krupp Fatigue Severity Scale)	Fatigue	Fatigue	Yes	No	Yes	No	3
VAS (Visual Analog Scale)	General	Fatigue	Yes	No	No	No	5
		Pain (cramp)	No	No	No	No	7
		Sleep	No	No	No	No	1
		Behavioural (emotionality)	No	No	No	No	1
		Saliva	No	No	No	No	1
SIP (Sickness Impact Profile)/ALS-19	General	Behaviour	No	No	No	No	5
		Neuropsychiatric	No	No	No	No	5
		Sleep	No	No	No	No	5
ALS-FRS-(R) (Amyotrophic Lateral Sclerosis Functional Rating Scale)	Physical function	Saliva	No	Yes	No	No	182
ESS (Epworth Sleepiness Scale)	Sleep	Sleep	Yes	No	Yes	No	2
PSQI (Pittsburgh Sleep Quality Index)	Sleep	Sleep	Yes	No	No	Yes	1
Norris Scale	Physical functioning	Behavioural	No	Yes	No	No	18
ECAS (Edinburgh Cognitive Assessment Screen)	Cognition and behavioural change	Behaviour	Yes	No	No	Yes	14
		Cognition	Yes	No	No	Yes	14
FBI (Frontal Behavioural Inventory)	Behavioural change	Behaviour	Yes	No	Yes	No	1
ACE-III (Addenbrooke’s Cognitive Examination—III)	Cognition	Cognition	Yes	No	Yes	No	2
ALS-CBS (Amyotrophic Lateral Sclerosis Cognitive Behavioural Screen)	Cognition and behavioural change	Behaviour	Yes	No	No	Yes	2
		Cognition	Yes	No	No	Yes	2
MoCA (Montreal Cognitive Assessment)	Cognition	Cognition	Yes	No	Yes	No	1
Verbal Fluency	Cognition	Cognition	Yes	No	Yes	No	1
CNS-BFS (Centre for Neurologic Bulbar Function Scale)	Physical function	Saliva	No	Yes	No	No	2
CNS-LS (Centre for Neurologic-Lability Scale)	Emotional lability	Behaviour	Yes	No	Yes	No	1
DSM (Diagnostic Statistical Manual) and frontotemporal dementia criteria (FTD)	Diagnosis criteria	Behaviour	No	No	Yes	No	2
Symptom-specific Questionnaires	General	Pain (cramp)	Yes	No	Yes	No	1
		Fatigue	No	No	Yes	No	1
No Data on Assessment Tool	Emergent suicidality	Neuropsychiatric	No	No	No	No	1

^aPlease be aware that this is the number of times used, not the number of trials, as some trials may have utilised several outcome measures to evaluate the same non-motor symptom or a single outcome measure several times

^bIndicates self-reported cognitive problems, not a formal clinician assessment of cognitive function