Table 4.
Non-motor symptom evaluation summary
| Non-motor symptom | Assessment group | Assessment tools used to evaluate | Frequency of use as an outcome measure (% of 237 total trials) |
|---|---|---|---|
| Neuropsychiatric | QoL measures | Sickness Impact Profile, SF-8/12/36, ALS-19, ALSSQOL, ALSAQ-5/40, ESAS, EQ-5D-5L, EQ-ED-3L, McGill | 74 (31) |
| Symptom-specific | ADI-12, HADS, Hamilton-Depression, Columbia Suicide | ||
| Cognitive | QoL measures | Sickness Impact Profile, ALS-19 | 16 (6.8) |
| Cognitive | ACE-III, ALS-CBS, ECAS, MoCA, DSM Criteria (used as dementia diagnostic criteria), Verbal Fluency | ||
| Behavioural | Quality of life and caregiver burden | Sickness Impact Profile, ALS-19, Zarit Burden Interview, Caregiver Burden Inventory | 37 (15) |
| Symptom-specific | ALS-CBS, CNS-LS, ECAS, FTD Criteria, Emotionality Analogue Scale, FBI, Norris Scale | ||
| Pain | Quality of life | ALSSQOL, ESAS, EQ-5D-5L/3L, SF-12/36, McGill, ALSAQ-40 | 55 (23) |
| Pain | Cramp Questionnaire, Numeric Rating Scale, Visual Analogue Scale | ||
| Sleep | Quality of life | ALSSQOL, Sickness Impact Profile, Edmonton Symptom Assessment Scale | 12 (5) |
| Sleep | Visual Analogue Scale, Pittsburgh Sleep Quality Index, Epworth Sleepiness Scale | ||
| Fatigue | Quality of life | ALSSQOL, Edmonton Symptom Assessment Scale | 18 7.6) |
| Fatigue | Visual Analogue Scale, Presence vs Absence Questions, Krupp Fatigue Severity Scale, Fatigue Severity Scale | ||
| Saliva | ALS-FRS-(R), Visual Analogue Scale, ALSSQOL-R, CNS-BFS | 182 (77) |