Table 3.
Assessment tool suitability for ALS
| Domain | Tool acronym | Tool name | Administrator | Scoring affected by motor disability or speech impairment? (Yes/no) |
Disease-specific impairment threshold available? (Yes/no) |
Available in languages other than English? (Yes/no) |
Time to administer (min) |
|---|---|---|---|---|---|---|---|
| Quality of life | ALSAQ-5/40 | Amyotrophic Lateral Sclerosis Assessment Questionnaire—5 or 40 item | Clinician or researcher | No | Yes |
Yes [70] |
5–30 |
| Quality of life | SIP/ALS-19 | Sickness Impact Profile | Self-report questionnaire | No | Yes | No | 10–20 |
| Quality of life | ALSSQOL | Amyotrophic Lateral Sclerosis Specific Quality of Life | Self-report questionnaire | No | Yes |
Yes [71] |
10–20 |
| Disease burden | ESAS | Edmonton Symptom Assessment Scale | Self-report questionnaire | No | No |
Yes [72] |
5–10 |
| Quality of life |
EQ-5D-5L EQ-5D-3L |
EuroQol | Self-report questionnaire | No | No | Yes | 5 |
| Quality of life | McGill | McGill | Clinician or researcher | No | Yes | Yes | 10–20 |
| Physical | ALS-FRS-(R) | Amyotrophic Lateral Sclerosis Functional Rating Scale | Clinician or researcher | No | Yes | Yes | 5–10 |
| Cognition | ACE-III | Addenbrooke’s Cognitive Examination – III | Clinician or researcher | Yes | No |
Yes [73] |
20–30 |
| Cognition and behaviour | ALS-CBS | Amyotrophic Lateral Sclerosis Cognitive Behavioural Scale | Clinician or researcher and caregiver questionnaire | No | Yes |
Yes [74] |
5–10 |
| Cognition and behaviour | ECAS | Edinburgh Cognitive ALS Screen | Clinician or researcher and caregiver semi structured interview | No | Yes |
Yes |
15–30 |
| Behaviour | FBI | Frontal Behavioural Inventory | Caregiver questionnaire | No | No |
Yes [77] |
5–10 |
| Behaviour | NS | Norris Scale (bulbar sub-scale) | Clinician or researcher | No | No |
Yes [78] |
10–20 |
| Cognition | VF |
Verbal fluency (No data available on type of test) |
Clinician or researcher | Yes | Yes | Yes | 5–10 |
| Behaviour | CNS-BFS | Centre for Neurologic Studies Behavioural Scale | Self-report questionnaire | No | No | No | 10–15 |
| Behaviour | CNS-LS | Centre for Neurologic Studies Lability Scale | Self-report questionnaire | No | No | No | 5 |
| Sleep | PSQI | Pittsburgh Sleep Quality Index | Self-report and caregiver questionnaire | No | No |
Yes [79] |
5–10 |
| Sleep | ESS | Epworth Sleepiness Scale | Self-report questionnaire | No | No | Yes | 5 |
| Fatigue | KFS | Krupp Fatigue Severity Scale | Self-report questionnaire | No | No | Yes | 5 |