Table 2.
Items of the “toolkit” (translated into English)
| Bulbar function | |
|---|---|
| Does the patient have clinical signs of bulbar disease? | |
| Yes/No | |
| Do not continue if the answer is negative | |
| To what extent can the patient perform the following activities of daily living? | |
| 1 | Make themselves understood when talking to an acquaintance? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 2 | Make himself/herself understood when talking to a stranger? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 3 | Make himself/herself understood when speaking on the phone? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 4 | Talk for hours? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 5 | Speak louder to make himself/herself understood in a noisy room? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 6 | Drink liquids without choking or coughing? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 7 | Swallow pills? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 8 | Eat (chew and swallow) any type of food regardless of its consistency or texture? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 9 | Does the patient notice excess saliva in the mouth? |
| Never/occasionally/continually | |
| 10 | Does the patient need nutritional supplements (nutritional shakes)? |
| He/she doesn’t need them/they are a nutritional supplement/they make up the majority of your diet | |
| Breathing | |
|---|---|
| Does the patient have a vital capacity greater than 80? | |
| Yes/No | |
| 1 | Does the patient have a feeling of shortness of breath? |
| At rest/when carrying out activities or efforts/never | |
| 2 | Can the patient cough effectively (expelling mucus) in daily life? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 3 | Does the patient use cough assist? |
| Daily/occasionally (with respiratory infections)/never | |
| 4 | Does the patient use ventilatory support (invasive and non-invasive ventilation)? |
| More than 16 h a day/8–16 h a day (at night and occasionally during the day)/less than 8 h a day | |
| Axial function | |
|---|---|
| Does the patient have clinical signs of NIM in the axial region? | |
| Yes/No | |
| Do not continue if the answer is negative | |
| 1 | Shake the head to say yes or no? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 2 | Does the patient need to rest his head on the headrest when sitting in the wheelchair? |
| Needs support continually/needs support at times/does not need support | |
| 3 | Does the patient need to lean on the backrest when sitting in the wheelchair? |
| Needs support continually/needs support at times/does not need support | |
| To what extent can the patient perform the following activities of daily living? | |
| 4 | Keep sitting in the toilet? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 5 | Getting back into the wheelchair after losing posture? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| Upper limb function | |
|---|---|
| Does the patient have clinical signs of lower motor neuron involvement in the upper limbs? | |
| Yes/No | |
| Do not continue if the answer is negative | |
| 1 | Use a touchscreen phone or tablet? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 2 | Does the patient use the electric chair joystick? |
| Unable to do it without help/can do it with difficulty or needs an adapted joystick/can do it without difficulty | |
| To what extent can the patient perform the following activities of daily living? | |
| 3 | Use a computer? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 4 | Press a switch on the wall (light, elevator, etc.)? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 5 | Brush his/her teeth with any type of toothbrush? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 6 | Eat and drink independently? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 7 | Use a knife and fork (to cut food)? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 8 | Brush his/her hair? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 9 | Tuck into bed (in winter)? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 10 | Move around his/her house in a non-motorized wheelchair? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 11 | Put on a jacket or bomber jacket? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 12 | Put on a t-shirt or sweater? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 13 | Open a screw-cap bottle? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 14 | Grab objects from a high shelf? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| Lower limb function | |
|---|---|
| 1 | Stay up? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 2 | Put on socks or shoes? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 3 | Put on pants or skirt? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 4 | Standing without support while doing another activity? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 5 | Roll over in bed? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 6 | Walk around his/her house? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 7 | Can he/she wash his/her body in the shower? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| To what extent can the patient perform the following activities of daily living? | |
| 8 | Get into bed? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 9 | Walk down the street on a flat surface? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 10 | Go up a hill? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 11 | Go up a stretch of staircases? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 12 | Get up from the ground? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| 13 | Run? |
| Incapable of doing it without help/can do it with difficulty (includes the use of substitute methods, but not help from third parties)/can do it without difficulty | |
| Fatigability | |
|---|---|
| 1 | How long does it take the patient to complete a meal? |
| Same as the rest of the people (about 30 min)/up to 15 min more than the rest (about 45 min)/more than 15 min more than the rest (more than 45 min) | |
| 2 | If the patient has applied more effort than usual, does the fatigue last until the next day? |
| Often/sometimes/never | |
| 3 | Are there any activities that the patient has been able to do in the morning and that he/she has not been able to do in the afternoon or at night (has he/she run out of battery throughout the day)? |
| Often/sometimes/never | |
| 4 | When the patient does a daily repetitive task (writing or walking, etc.), does he/she notice that, when he/she has been doing it for a while, he/she does it worse and worse or has to stop? |
| Often/sometimes/never | |
| 5 | Has he/she been able to maintain his/her energy and activity level throughout the day? |
| Often/sometimes/never | |
| Other | |
|---|---|
| 1 | Does he/she have cramps? |
| Often/sometimes/never | |
| 2 | Does his/her functionality worsen with cold or humidity? |
| A lot/some/nothing | |